Why Breast Cancer Survivors Are Aging 20 Years Faster (And Doctors Don't Care)

0:00breast cancer rates rising but they're rising in premenopausal women they're rising the fastest in women under the 30. 80 percent of women who are diagnosed with breast cancer actually don't have a strong family history women are petrified of this where do women go right now in the current state of our medical system in the united states and really in the world they don't have anybody to go to because no one's coming to save you when it comes to this topic unfortunately your story inspired me so i actually want to start there with your story when i was 28 years old in 2001 i felt a lump they said oh you're too young for breast cancer let's just watch and wait at the same time

0:34my mom was being dismissed for cancer she dies of ovarian cancer at her funeral i said to myself well maybe i should get that lump checked out and then right before christmas i was diagnosed with breast cancer i'll give you a story about a young woman she was diagnosed about 28 and she struggled bad for two years because nobody would help her we got her some testosterone and guess what now she's doing fantastic she's living her best life i'm louise nicola and this is the neuro experience

1:05dr corinne i'm so excited to have you on the podcast i think it's really important to have context now you your story inspired me so i actually want to start there with your story and what happened during medical school yeah so my my personal medical story really informs how i care for patients and really my entire mission now in life so that's my silver lining um that you'll hear about so when i was 28 years old in 2001 i was a second year ob-gyn resident and i felt a lump and i dismissed myself

1:37my doctors also dismissed me some of my fellow colleagues dismissed me and they said oh you're too young for breast cancer let's just watch and wait at the same time my mom was being dismissed um for um stage four ovarian cancer um with a delayed diagnosis so she dies of ovarian cancer at her funeral i said to myself well maybe i should get that lump checked out and you know a few weeks later i did and then right before christmas 2001 i was diagnosed with a stage 2a erpr positive breast

2:09cancer and that's the beginning of my story um and at the time i knew enough that breast cancer treatment was likely going to impact my fertility and that was the very first thing that came into my mind i may never be a mother because i knew enough about the impact of cancer treatment on a variant on the ovaries but what never occurred to me because remember this is 2002 or 2001 you know uh less than a year later the women's health initiative results would come out and we didn't really have

2:42any menopause training specifically in my residency so i was really not prepared for what was about to hit me which was premature menopause um at the age of 28. you're so inspiring because now you you've been through it and you're actually showing that once you know what your diagnosis is and once you get the correct help with the correct information you can do anything really there's so many different pathways and that's what we're going to speak about so thank you for opening up with that i actually want to talk about uh breast cancer survival rates because apparently they're better

3:15than ever 85 cure rate for early diagnosis but the treatments that achieve that curse systemically destroy estrogen is that correct for the majority of breast cancer um about 80 percent are estrogen receptor positive and we can speak more about what that actually means but because of that um either lowering or blocking estrogen production or estrogen receptors are a mainstay of treatment and the issue is that not only are you know breast cancer rates rising but they're rising in premenopausal women

3:48actually they're rising the fastest in women under the age of 30. so you know that leaves the question we know what we're doing to treat these women so we've got a larger army of them who are living longer surviving um but living so many years with significant estrogen deprivation and then there's another 20 percent that are not estrogen receptor positive but many of these women are also plunged into early menopause due to their chemotherapy um neither group is getting adequate evidence-based medical care

4:20to manage the collateral damages of those treatments and it is a growing crisis of care um the last thing i will add is that it's not just breast cancer patients and that's what i speak about a lot but we have to remember that cancer rates are growing um in all different types of cancers colon cancer those women have chemotherapy and radiation to their pelvis uh gyn cancer rates are rising um and then lots of cancers that have nothing to do you know like colon cancer with hormones and yet their premature menopause from treatments are not addressed and do you i think look i've i've seen this

4:55this because uh a lot of women now in their 30s are actually speaking up saying you know just diagnosed with uh any form of cancer and they're speaking about it so it's begs the question are they rising or do we just now have access to early diagnosis well both but they're definitely rising you know we we know across the board rates for all cancers in particularly in young people are rising and there's a whole host of reasons why and so it really behooves us to kind of recognize well yes

5:27we need better treatments for them but we also need to better support them with the collateral damages of these treatments and so i always say if you think the average menopausal woman doesn't get access to you know information about menopause and hormone therapy well let me introduce you to the cancer survivor and particularly the breast cancer survivor because they basically feel like they have a big pink x on their backs and no one wants to really talk or deal with you know that issue well it is very frightening yeah you know to get that to get that diagnosis so i think actually before we move on it

6:02might be might be great to lay the land of what breast cancer is because you mentioned one can be hormone related and then and then also is there a predisposition if your if your mother had it your grandmother had it but then there's a there's a whole host of women getting this disease and or getting cancer and nobody in their family has cancer so let's let's lay it all out yeah so really important first off is that breast cancer is heterogeneous so fancy word that just means there's lots of different types of breast cancer and i always see to patients your breast cancer and its treatment is as unique as your

6:37fingerprint there's so many different factors that you know make your breast cancer unique and so should be your management of your menopause and your survivorship we have to look at like what are the factors that are you know relevant to your cancer number one um and so that's a big problem we lump all breast cancer patients into one bucket when we're talking about how we're managing menopause and premature menopause the other thing is eighty percent of women who are diagnosed with breast cancer actually don't have a strong family history so we can't just um pretend

7:08that if oh i don't have a family history i'm not at risk we need to be doing risk assessments sometime really by the age 25 um and that may just be a really thorough family history and also some education about what modifiable things you can do with your lifestyle um to lower your risk of breast cancer but then you're going to repeat this risk assessment over time so maybe you're a few years older and you've had i don't know a benign breast biopsy and that breast biopsy you know um showed something that you know elevated your risk or maybe you found new things in your family history

7:42because your family history changes and so we should periodically be trying to find which women are more high risk and not just based on family history so which women can we screen um for not only refer for genetic testing but which women do need earlier imaging and which women don't right and so uh that's something that we're all working on but i think most patients are not really getting that part adequately um and so that leaves a lot of vulnerable women who could be identified as high

8:13risk who are not being identified as high risk right um and then that kind of it you know gets into what you answered or asked about you know are there some specific things that we can you know identify like a brca mutation or other mutations so we talk a lot about the brocca genes and i think the public is pretty familiar with that but it's really important that women know that there are other genes that we've identified that also raise the risk of breast ovarian and then other cancers as well depending on the gene but the interesting thing is i think about one in four adults or people in the u.s qualify for at least a

8:50referral for a genetic counselor and to be screened for hereditary um cancers um but i think only like 10 percent actually get that referral uh so there's that's a huge problem because there's there's probably hundreds of thousands of people walking around out there with a hereditary cancer mutation that's clinically actionable that we can do something about um i like to say you could have your cake and eat it too you can you could find out your risks and we could really be empowered to take care of that and

9:20it doesn't necessarily mean you're going to be um put into menopause and we won't give you hormones we're going to talk about that do you think a lot of this just comes down to education because i you know you and i are in uh we run in the same circles and we speak to the same people and to me it's like the apo e4 gene i think oh and you know i i see women every day and they don't know they've never heard about this so a lot of women just don't know how to ask their physician hey should i be getting this tested yeah it's a lack of patient education there's a lack of clinician

9:54education um doctors medical oncologists ob gyns internists they have so much to learn and cover and unfortunately not only is menopause not covered very well but these genetic and hereditary you know cancer genes um or you know these other things that they should be screening patients for um is also not really valued right and then i think when we add into that the healthcare system is really not set up for doctors and patients to actually have time to like really talk about

10:25these things there's so many wonderful physicians the medical oncologist out there who helped me saved my life and i really am grateful and i also really feel bad for them because they are burdened with the same pressures we all are as physicians they have a very short period of time with their patients and so they don't have time to address a lot of these concerns that we're going to talk about today one of the best ways to improve brain energy metabolism is to make sure that you have adequate ketones circulating in your body this is why i ingest ketone iq i'm obsessed with ketones

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12:09foundation that's why i started using daily basis it's a cycle aligned multivitamin powder two formulas one for each phase of your cycle replenish in the first half especially around your period to restore what you're losing and balance in the second half to support mood inflammation and gut health it's one stick a day you mix it with water that's it for me the biggest shift has been consistency in how i feel more stable energy in the first half of my cycle and in the second half better focus better mood and i'm

12:43sleeping better it's foundational not a stack not a quick fix just one thing a day that covers what most people are missing they're doing a really special offer for the neuro experience audience you can use coding euro for 50% off your first month that is coding euro for 50% off the link is below in the show notes yeah i actually want to get into some of the um genetic mutations so we mentioned BRCA1 is there BRCA2 yep BRCA1 and BRCA2 and um those are the most common and i think it's really um important for us to make sure

13:20sure anybody listening to this that knows that um you know these um genes are identified on proper genetic um tests so like a fun 23 and me is not sufficient enough and then it's a little interesting story um about me i was initially tested negative for the genes and i remember thinking to myself well that doesn't make sense like but this was 2001 it was the early days of this testing and um i didn't really you know it never sat well with me i was like my mom was 54 when she died i was 28 when i was diagnosed so many years later when i was doing some continuing medical education for myself in my

13:56practice it was around 2014 or so and i said to my oncologist hey i think you need to do update testing he's like oh i don't think you really need it it would be very unlikely i was like no test me and of course he called me about a month later he's like i've got bad news i'm like it's really not bad news um i want to know i want to know why i got breast cancer he's like you're a brocca 2 carrier so my initial testing was negative and update panel testing um showed that i did carry it because before 2013 the full rearrangement of the gene was not standard of

14:29care and i see countless women who tell me oh my mom was tested a long time ago or or them they themselves were tested um and they're long-term survivors of breast cancer but they have a lot of high-risk features and i said you need update testing because we may need to know about your risk of ovarian cancer or your risks to your family or your children so you tested positive for brocca 2. yeah uh what's the difference between brocca 1 and brocca 2. so there's differences between the rates um and the age of onset of uh breast and ovarian cancer so you know kind of big picture wise when

15:03we think about like ovaries because that's really important when we talk about these brocca carriers brocca 1 carriers tend to be diagnosed with ovarian cancer earlier than brocca 2. so the brocca 1 and there's a little bit more data and research on brocca 1 um patients brocca 1 carriers are you know recommended to consider having their ovaries removed really by the age of 35 to 40 when they're done with their childbearing um and then um brocca 2 between 40 and 45 and frankly with the rates of ovarian and breast

15:36cancer just getting younger and younger i personally recommend these patients to not wait and but the problem is is they wait because no one is helping them with the surgical menopause that happens once they have their ovaries taken out um so so yeah so the the age of onset is one big thing and then the rates of um breast cancer as well but you know more importantly is that we shouldn't just be thinking about the brocca 1 and 2 gene because many patients were only tested for that and now we know other

16:08genes the atm mutation pulp 2 i mean the list is growing ca 51 is that a there's a there's a whole bunch of them you may be thinking of a ca 125 125 yes so ca 125 is a blood test that we can do it it's it's not a screening test for ovarian cancer but it's something that can be elevated if something's going on with the ovary but it can be elevated for lots of reasons um but i'm glad you brought that up because you know the thing about the brca 1 and 2 gene we know that they have an increased risk of

16:38ovarian cancer but we don't have a screening test for ovarian cancer there is no screening test so if you carry one of these genes we would put you in a high risk surveillance program and you know have you get a pelvic exam and you know some programs will you know offer a pelvic ultrasound or ca 125 to kind of follow these patients but those have not been shown to be effective at screening meaning they don't um lower the chance of dying of ovarian cancer right so it's not the same type of screening as mammography and that's why in these carriers having their ovaries removed when you know they don't need

17:13them anymore quote unquote for fertility is really really important um and the biggest message is for these carriers we call them previvors they've not had cancer yet these patients can remove their ovaries and they can and they should have full hormone replacement therapy up to at least the age of natural menopause but i'd say easily less than 50 percent probably much less actually get offered that and if they do they often have to fight for it and it's a tremendous crisis well that's what we're dealing with now well at least you are yeah yes it's a huge problem okay so we're going to move in and

17:47talk actually now a bit about the biology of estrogen because i think this is really really important so 70 to 80 percent of breast cancer of breast cancers are estrogen receptor positive as you mentioned so let's just talk about what that means now yeah so i think this is really really important because patients often think and even doctors i think are at fault for sometimes sending this message that estrogen caused their breast cancer because their breast cancer tumors have estrogen receptors on it so i think it's important for all women to know really just so that they understand the

18:20physiology of their bodies that we have estrogen receptors everywhere as i you know you talk about we're always trying to inform patients estrogen receptors in your brain on your skin on your breast males have estrogen receptors on their breast children have estrogen receptors on their breast so if you develop estrogen receptor positive breast cancer it means those tumor cells have developed they've retained they've kept that estrogen receptor and they may even over express it right because that estrogen receptor can be used to help the cell grow right it doesn't mean that the

18:55estrogen caused the cancer right and so i think that's really really important because when you tell women or women think that then it teaches them to fear their own cancer or fear their own bodies and fear their own hormones and um sometimes it makes them even feel guilty like oh did i do something to cause my breast cancer was it my birth control pill or was it that i never got pregnant or was it you know some other reason or i didn't breastfeed long enough or whatever the reason is and so i think we have to separate that out um but the other important thing is um we have to recognize that the mainstay

19:30of treatment for er positive breast cancer is to block the estrogen receptors or lower the amount of circulating estrogen and uh you know that's a real fact and it's uh the mainstay of treatment and so if that's what we're doing to women then we better have solutions to help them manage that and we also better need to better um decide which patients need that for a longer period of time so the estrogen deprivation for longer and which patients can have it for less amount of time or to a less severe degree

20:06um and so really individualizing that and then helping the patients um in the long term this episode is brought to you by iq bar our exclusive snack hydration and coffee sponsor guys the iq bar the protein bars and the mushroom coffees are next level not just delicious but they're low sugar brain and body fuel that i take with me every day high performers understand something that most people miss what you eat isn't just calories it's inputs and inputs determine outputs so if your brain is

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21:49so to get 20 off text neuro to 64 000 all you have to do is get your phone out text neuro n-e-u-r-o to 64 000 that's neuro to 64 000 message and data rates may apply there's a difference between feeling functional and feeling like yourself and most women i work with are operating but they're not at their baseline their sleep is slightly off their mood is slightly unpredictable and thinking isn't as sharp

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23:28your purchase biologica.com slash neuro to get up to 30 off your subscription you said something really interesting that i just wanted to ask you because you said you know sometimes people think maybe they didn't have kids or they didn't breastfeed for long enough why does or being on the oral contraceptive pill why how do they correlate to breast cancer if they do so you know i i don't think we know exactly what actually causes cancer i know period or what causes breast cancer and i think we have to step back

24:00and get away from this idea of estrogen good estrogen bad um a lot of these more i'd say more simple risk assessment models for breast cancer like the gale model will take into account like how old were you when you got your period how late were you when you perhaps went through menopause did you breastfeed how many children did you have and they're they're relating it all to the exposure of estrogen but if we take a step back and understand that your breast tissue is in cells there's ducts

24:31there's lobules they're um they're ever changing tissue and you know they they change with you know throughout the month with your menstrual cycle they make profound changes during pregnancy then profound changes during lactation and then changes post menopause and so it's not that estrogen bad estrogen good but it may be you know things that are happening at a microcellular level with all of these different changes um because it's very interesting because pregnancy with very very

25:04very very high levels of estrogen is protective okay breastfeeding then um changes the breast tissue and makes it into a more the lobules mature and the whole structure changes so that it can obviously produce milk and it's going to be in a kind of a different state a very stable state for maybe perhaps many months some women might breastfeed for for longer than that over a year or more right and so that's going to make changes to the breast which have been shown to be protective right um so

25:36that's a lot different than saying estrogen causes breast cancer very different yeah and also remember there's other things that are happening every month with your menstrual cycle there's progesterone being you know produced there's yes testosterone being produced um all kinds of things and so um i think that that's important because um the the the more sophisticated risk models understand um the tyrocusic and now we're going to have much better risk models you know driven by ai and you know more advanced technology that are looking at a lot of other things right including breast density um and other

26:10changes um and then also environmental lifestyle factors um nutrition exercise there's so many things so um and i think that's what accounts for why we see growing rates of cancer and not just breast cancer because we know it's not just estrogen it's you know inflammation obesity environmental toxins chronic stress you know alcohol a huge host of things well actually alcohol when you relate it to any type of cancer it is strongly correlated out of all the cancers to breast cancer yeah and what

26:46what makes me a little i get a little annoyed when i see people say well it's because alcohol raises estrogen levels and i'm like you know how about that alcohol causes chronic inflammation immune dysfunction i mean we can go on and on a whole list of really it's literally a toxin to the cell and so um to just be like well it's because it raises estrogen levels i'm like well i think it's a little bit more than that if that was true then uh the same would be true for i remember uh do you remember going through that phase i was very young but they said that don't eat was it tofu

27:18yes yes because chickpea uh sorry yeah and edamame and so soy because you know plant-based phytoestrogens are weak agonists on estrogen receptors and in fact they've been shown to be protective so i think again we have to stop with this black and white yeah you know if estrogen was a bad toxin then i don't think you know us as females would be doing very well right you know i think it's a lot more complicated than that so let's keep moving on to um estrogen blockers and i actually

27:48want to highlight tamoxifen tamoxifen tamoxifen so walk me through what tamoxifen actually does and you know it in terms of the brain it's blocking estrogen receptors but those receptors aren't just in the breast tissue it's also in the brain so what is it actually doing yeah so i think it's really important um listen i we're going to talk hard things today i took tamoxifen for over 10 years i you know i'm not doomed right so we're going to say some hard things about what these medications do to your body and we have to recognize them so that we can empower women to

28:20manage these medications so like i said manipulating the receptor or lowering the estrogen levels are a mainstay for er positive breast cancer so tamoxifen was really the the really groundbreaking medication decades ago that changed the course of treatment for breast cancer because it's a selective estrogen receptor modulator and that just means that in certain tissues it binds to the receptor and it's an agonist or it promotes you know the effects of estrogen and other tissues it's an antagonist it blocks so in breast tissue or breast cancer cells it's a blocker so it's

28:57blocking estrogen receptors there in the uterus it actually promotes the estrogen receptor so that's why women who take tamoxifen can have irregular bleeding they can have ovarian cysts they can have worsening of their endometriosis in the brain of course it's not so well studied just like a lot of things in women's health um it's um it does cross the blood brain barrier and it is an antagonistic on parts of the brain and there may be parts of the brain where it's an agonist on um and the same in the bone it is a

29:30weak agonist but when it's competing for estrogen it actually causes osteoporosis and bone loss in a premium menopausal woman but in a post-menopausal woman when there's no estrogen on board it's a weak agonist so it helps with bone loss so again tamoxifen really um the most important thing to know is it is blocking estrogen receptors in the breast but it's not forcing you into menopause estrogen does not lower your estrogen level but it causes menopause symptoms and when we're talking

30:00about the brain those symptoms could be worsening hot flashes cognitive changes mood changes obviously night sweats um sleep issues um and and really there's an impact on you know every body system but a lot of women you know i think think or wrongly are told that tamoxifen itself is going to put them into menopause and then when i tell them actually tamoxifen raises your estrogen levels because it actually stimulates your ovaries to produce more estrogen right um but what it's doing

30:32is blocking the receptors to those estrogen that actually makes a lot of sense obviously we've got a lot of the estrogen receptors over the hypothalamus which is the thermoregulatory pathway in the brain so if we block that and we don't have access to understanding our internal body temperature it's going to cause hot flashes however when the estrogen is getting released from the ovaries and you've just got a whole bunch of circulating estrogen yes but the estrogen that is released um when women are on tamoxifen is less bioavailable because when you're on tamoxifen your sex hormone

31:03binding globulin goes way way up because tamoxifen acts like an oral estrogen in your liver so basically estrogen levels technically are higher they're less bioavailable and um you've got this selective blocking in different tissue but when you stop tamoxifen your those effects do go away and it doesn't leave you in permanent menopause and tamoxifen is really interesting because it could be used for women who are premenopausal and still have their ovaries working and making estrogen and in general not everybody but in general women tolerate tamoxifen better when they're premenopausal although some

31:39women have a lot of side effects but then tamoxifen is also used with ovarian function suppression in younger premenopausal women who are higher risk for recurrence so these are the different layers of adjuvant endocrine therapy um and then um for years in postmenopausal women tamoxifen was the standard of care now it's kind of been replaced by aromatase inhibitors for postmenopausal women although we can still use tamoxifen in postmenopausal women team one of the biggest problems i'm having is hydration so i get weekly ivs just purely because i feel like i'm not hydrating like i drink all day

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34:26slash neuro after you check out they'll ask you where you heard about them please support our show and tell them that the neuro experience podcast sent you well let's take it a step further and actually talk about aromatase inhibitors because they don't just block the receptor they eliminate the residual estrogen production entirely yeah so aromatase inhibitors kind of emerged after tamoxifen as a treatment and so in order for aromatase inhibitors to work you have to be menopausal so if you're either naturally menopausal or if you're higher risk for recurrence you'll either be given medications to

35:00shut down your ovarian function or you would have your ovaries removed surgically and then aromatase inhibitors what they do is they prevent um androgens testosterone from being aromatized into estrogens right um and so you know that aromatization happens you know um in the breast tissue right um and also happens in fat cells and throughout the body um and in the brain and so it's um so what it's doing is taking a menopausal level of estrogen because women have to know that even in menopause there's

35:33still low levels of estrogens being produced you know from this conversion in fat and you know other places of the body so it's basically i i tell patients it's taking it and putting your estrogen like down into the basement like almost zero right so that's where its impact is on all of these symptoms it's not that it's blocking receptors um aromatase inhibitors it's just making your estrogen almost zero and a very profound state of deprivation it's not lowering your testosterone levels it's lowering

36:04your estrogen levels and it has a um a really profound effect um on you know uh your your your symptoms and and frankly your long-term chronic disease risk that we need to talk about it's very very effective and helpful for treating the breast cancer so we've got to do two hard things at the same time we have to treat these women's breast cancer but we have to recognize this collateral damage and we have to find a balance um and so i kind of alluded that some women will need or will only

36:37need kind of you know not as severe uh you know endocrine therapy other women who are younger or have more high risk features like a larger tumor size you know more lymph nodes you know a higher stage disease you know they'll be recommended to be an aromatase inhibitor with ovarian function suppression and then the timing also differs some women are recommended it for five years some women are recommended for up to 10 years and then if a woman has a stage four or a metastatic disease she'll be on that type of you know treatment for the rest of her life i've known you for quite some time um and i the

37:13more i'm talking to you now in a podcast setting i realize how specialized you are and it's really beautiful because you you often don't see them we know how many you know there's so many different medical specialties right now and you're going to ob-gyn and you know you can just stand there right and just do the normal thing or you can go and investigate and yours obviously came from a personal battle that you had yourself which makes you so brilliant i mean where do women go if they're not coming to you how many like yeah this do you like it's really hard yes yes and listen it was a

37:45specialization by by necessity i was struggling i i felt terrible i was not well cared for by my doctors when it came to this um they did a great job in other ways and i'm grateful for that but i was on my own with this and um and i really it wasn't until i you know i had to kind of get myself educated in basic menopause you know management um and now it's just become this like passion and labor of love and the good news is is that um the trickle down effect is happening but it's happening way too slowly

38:18i think so there are menopause specialists who are now like okay i'm comfortable with general menopause now i want to learn a little bit more and there is a movement in the medical oncology community thank god to start to like recognize this because you know medical oncology you know residency or you know fellowship training programs they don't have any menopause training general ob-gyn residents barely have it why would we think that the medical oncologists are going to have it and they have to keep up with so much new information and so i i think um and also the

38:50army of survivors are standing up i think because of social media this is a positive of social media and saying like wait this is not okay like to have severe genitourinary syndrome and menopause due to breast cancer treatments or horrific hot flashes nights with insomnia for literally years or decades without much help besides have some coconut oil take a little magnesium and be grateful you're alive it's just no longer it's starting to be it actually is no longer acceptable and i think finally the medical community the medical societies just the past year or two were starting to step up and say

39:22like maybe we should have some lectures on this maybe we should ask somebody to speak on this maybe we should educate ourselves so when a woman comes to you are they coming for a specific purpose yeah so i think for me my my practice at this point has gotten like so specialized mainly because of my you know you know just my public education etc so people who seek me out and they're really seeking me out um they've already they've already seen the general menopause specialist they've already tried the basic stuff and they're seeking me out for two reasons either to help them manage

39:54their endocrine therapy or their current breast cancer treatment right so like you know they're here they're here saying like okay i understand at this point in time i can't take systemic estrogen but how can i get through this how can i manage that and then there's another group a large group of women who they were many times very early stage um this is you know for the most part behind them in terms of active treatment many of them were very young at diagnosis but some of them were already you know postmenopausal and maybe were on hormone therapy had to come off of it for their treatment

40:26whatever um and they're like could i ever consider some form of hormones right um understanding that there's local vaginal hormones systemic estrogen and and also the testosterone question and so those are kind of the two buckets of patients that i'm getting and then mixed into that are the genetic mutation carriers the brca carriers who are previvors who have this fear of breast cancer or they're being managed for their you know breast cancer risk nobody's helping them with what that means yeah well i think across all the specialties it's important to recognize that you can go and get a

41:01blood test right you can see your biomarkers it's about who is interpreting the data and who's actually putting you on the protocols necessary after that just like getting an apo e for a positive genetic test you know your pcp can say yep you're positive but what do you do now exactly so let's keep i love that by the way um i think you're phenomenal let's keep going um and talk about oophorectomies so at the mayo clinic cohort data from walter rocker's group show that bilateral oophorectomy before the age of 46 is associated with increased risk of cognitive impairment and dementia but before we even

41:36talk about that can i just understand why would someone get an oophorectomy yeah so there's lots of reasons why we remove ovaries both benign reasons and cancerous reasons right um and so you know this term iatrogenic menopause um just means a medically induced or a surgically induced menopause either from giving medications that shut down those ovaries or by surgically removing them and so you know what's really important to recognize is that there's a whole lot of women out there who go through menopause

42:08early um so early menopause is prior to the age of 45 and premature menopause is prior to the age of 40. so the numbers are about three to four percent of the u.s population will have premature menopause and i believe that rate is growing because of what we're talking about more breast cancers being diagnosed at younger ages and more genetic mutation carriers having prophylactic you know oophorectomies having their ovaries removed you know prophylactically as risk we call

42:38risk reducing surgery right um and then also a whole group of patients who go through menopause early just because of chemotherapy from maybe other cancers but there's other reasons why women go through early menopause endometriosis um you know treatments um there's something called premature ovarian insufficiency um idiopathic where it just we don't know exactly why there might be an autoimmune component and really interesting talking about the brca carriers there's data to suggest that brca one in particular but also two um just that mutation alone causes premature ovarian insufficiency so

43:15even not these women are at risk because they're often told you know we are we tell them all to take their ovaries out eventually but just having that mutation increases their risk of you know earlier menopause so um so that's a lot of women so when you say okay three to four percent i mean do the numbers it's millions of women and then if you count in the women from age 40 to 45 um the numbers vary but it's anywhere between like six and twelve percent of the population will you know go through menopause earlier and uh you know that's like could be six million women right and that's just the us alone

43:49right and some of those things that could be just like a little earlier menopause think about how many women get their uterus removed but they keep their ovaries when that happens you have an earlier menopause likely because of collateral blood flow from the from the uterus to the ovaries gets cut during that hysterectomy but they're not informed of that risk and they don't know to like look out for it and then the women who are the really you know also very high risk for that are are black women because they are more likely to be pushed to surgical treatments for their bleeding and other pelvic

44:20pain problems rather than you know be offered other conservative measures and they're also the women who are the least likely to get help with menopause in general so as you can see it's not just the cancer patients that i'm fighting for i mean obviously that's the most you know personal thing to me but i see that this is something that is reaching you know a very broad segment of um of the female population you know even me for example um who's literally these are my circles i still haven't

44:50been tested for BRCA1 or BRCA2 um don't have a family history but i mean i would still like to get tested and i don't even know where i would get tested for that so why don't you tell us yeah so the good thing is is that you know um genetic testing is becoming you know much more available the biggest problem is people not getting referred um insurance will generally not cover genetic testing if you don't meet like the nccn you know guideline criteria for testing but a lot of people actually meet the guidelines and they don't realize it um and you know there are um you know commercial

45:23or i should say direct to consumer tests that are medically grade that you can you can get um done for probably about 250 cash price if your insurance won't cover that genetic testing but i always encourage women to meet with a genetic counselor because it's not always just BRCA1 and 2 so patients might say well i don't have a breast cancer family history but you know i've got a bunch of you know family members with colon cancer or some gastric cancer or uterine cancer or uh you know a lot of you know um male relatives with more aggressive prostate cancer melanoma so pancreatic cancer so

45:57we really want to do a really thorough job um and there are some out there who advocate for more population-based testing but you know that that's a a cost risk benefit analysis out there yeah i think um i think it's also it's interesting when you can now tie in you know i'm not sure if you've had an an apo e4 carrier who's also had an oophorectomy and how you counted that and where did that go so i that happens actually it's happening more frequently where i see patients who are either BRCA carriers who

46:30are just contemplating the timing of their ovaries out or these women who have breast cancer who are in premature menopause or you know severe long-term estrogen deprivation from their treatments and they're like dr men i'm really worried my mom had dementia we've got early onset alzheimer's or i find out that i you know i carry the apo e gene and they're terrified right i don't want them to be terrified i want them to be empowered um but the fact does remain that all three factors can um you

47:01know make it all worse right so when we take the apo b apo e gene we add it to the brca one or two mutation which again we just said they're at a higher risk of cognitive changes you know dementia just because they have the gene um and they're at risk of losing their ovaries early and so that combination of those things all together it's it's a snowball effect of course and then the other thing is these patients are not having their hot flashes their night sweats and their insomnia

47:33managed which we know if you're not managing that that's also adding to your dementia risk so like unmet side effects are causing the risks to go up um and these things could all be helped but no one is putting these pieces together and no one's informing these patients they're told you might have some hot flashes and some vaginal dryness and then they're sent on their way and maybe given an ssri um you know antidepressant um and told you use some coconut oil when we could do so much more and that's saying

48:05coconut well who's prescribing coconut oh i'm obsessed with this so they're like i'm like cooking oil is not evidence-based medicine for what well because this is what i i can't even i mean because this is the problem so you're gonna make me laugh here but it's not funny all right major cancer centers here in new york city are telling patients that first line for their genitourinary syndrome of menopause severe atrophy pain with sex aromatase inhibitors in particular cause really severe you know atrophy

48:39and changes um and also urinary tract infections etc um and they're so they're told again because of misinformation and fears about local safe vaginal hormones that are guideline supported that let's just start with moisturizers and lubricants and for some reason this idea of coconut oil and so i can't everyone's like well they just told me coconut oil you know and so listen i'm not against coconut oil like a single ingredient organic coconut oil can be a lovely moisturizer lovely okay a moisturizer is not

49:11going to fix atrophy it's not going to improve blood flow it doesn't prevent urinary tract infections and it doesn't prevent you from having urgency and frequency maybe waking you up at night so this is why it's related to brain health because if you were woken up every night to urinate you're having disrupted sleep that disrupted sleep is not good for your brain if you have a total breakdown in your sexual function your relationship with your partner what does that do to your brain i see a lot of women present to me where they're i always ask them what's your number one you know thing that you want

49:44to get out of today's visit you know if you could pick one thing and some say i want to be able to have sex with my husband again i want to have intimacy i want to have pain sex without severe pain think about what that does to a brain in terms of depression and mood and anxiety so these things are all related right they're all related and so i get mad when i hear that crisco crisco we don't even use crisco to bake with anymore like we don't do that like that's old school right why would we put it

50:19in our vaginas like it's not okay we have good high quality vaginal moisturizers you can use vaginal estrogen is extremely safe for these women who are dealing with an ear positive breast cancer um so yeah yeah i think this is a really good segue now into um the denial of hormone replacement therapy now we've covered hrt in the women's health initiative but i can only imagine that you're probably still getting a plethora of women who say to you but hang on i'm not going to take estrogen because doesn't that raise my risk of getting breast cancer yeah so you know i i also see women who

50:52want to consider hormone therapy but oh i have a family history of breast cancer or my my grandma had breast cancer or i have dense breast so i'm afraid my doctor says you got to stay away from that stuff it's you know it's poison so yes i spent a lot of time breaking down the myths there um and then helping women who either are very high risk for breast cancer or or who have already had it who want to consider could i ever consider hormone therapy yeah i think there's also something that's not being met it's the one who's actually been through cancer yes and i want to actually know um who owns

51:25this patient the oncologist says my job is done you're cancer free the gynecologist says i can't give you hormones because you're of your cancer history the neurologist isn't even in the conversation so what happens to the women who have had breast cancer they've been through their therapies they're now cancer free and they've lost you know they don't have their ovaries anymore they need hormone replacement therapy therapy to preserve longevity and brain function where do they go to well right now in the current state of our medical system in the united states and really in the

51:59world they don't have anybody to go to i mean they have me and people like me um and and there are more doctors who are trying to help um and and it's not always hrt is the answer um i would love to give them all hrt but there are some patients that can't have that right if you have you know um a reason why we have to keep you on your hormone blockers or your risk of recurrence is really high but we still have to help these women there's so many things we could do to help them um whether it's lifestyle medicine pillars non-hormonal medications for their hot flashes and night

52:31sweats um and then for a subset of those patients they might be able to consider menopausal hormone therapy and we can talk about where you know things are headed with that in terms of like the the thinking and you know the conversation but the problem is exactly what you named nobody is owning this space the top cancer centers in the united states none of them have survivorship like really robust survivorship programs that include menopause care or management of estrogen deprivation and the

53:01collateral damages meanwhile 80 percent of the cancers the breast cancers that they're treating the mainstay of treating them is severe estrogen deprivation so how do you not have a survivorship clinic that actually has informed up-to-date physicians and other clinicians that know what this means i mean i am actually at my wits end at this point where i see really top prestigious cancer centers that are doing incredible work saving people's lives and then not having the infrastructure

53:33to even answer the question on can she use vaginal estrogen i mean that is how low the bar is these women can't even get guideline approved like nccn guidelines you know this is not a uh a controversial topic vaginal hormones but these centers can't even get patients prescriptions for that so do you think they're getting help with this other stuff that we've talked about about the increased risks of dementia and bone loss and sexual function and you know cardiovascular risks i mean all of these things

54:05are increased in these women um and they're really kind of left to be i'm trying to tell them you have to be your own ceo and you have to manage this because no one's coming to save you when it comes to this topic unfortunately why do you think it is then because you know that we're in new york right now i think what the premier is sloan kettering okay so people go there do you think it's because they're just trying to be we want to get rid of the tumor no i i think it's because the way the medical um you know system is a setup in terms of reimbursements like i'm sorry like this type of care

54:40doesn't pay it doesn't generate a lot of money um resources are are are kind of you know finite and they're not being kind of there's no resources put to the side to help this dimension of care i think the demand and the interest for it and the realization in the oncology community is growing that like hey we do need to put resources there but it's not really happening i mean you know and in fact in some of these centers i've even seen the survivorship programs get cut or or closed or you

55:11know maybe they're only have people there you know a few times a week but even if they have a survivorship program it's not generally addressing these things it's it just isn't um and so what is it addressing it's addressing things like okay um you know did you have your you know is your you know if they're still getting mammograms is your mammogram up to date are you up to doing your pap smear how's your blood like some basic things you know some of them have sexual medicine um help um but a lot there i find extremely overly cautious and really not evidence-based and that's where they're

55:46like told start with non-hormonal moisturizers and coconut oil the famous coconut oil again and when you tell a patient that what message does that send it sends well you have to suffer and come back to with severe symptoms in order for you to qualify for the safe evidence-based treatment that we know works where else in medicine do we tell patients just do something that we know isn't really that effective for actually what's happening suffer and then maybe four years later or whatever

56:17it is when you really you you could barely have even a pelvic exam then maybe you can come back and maybe we'll consider some vaginal estrogen in fact the problem is is that those changes of you know kind of progressed so much that you know it can take a lot longer to get function back we can do it but it's hard and i and that's a good example of what's happening everything else in the body so the same thing with brain health with mood depression anxiety with cardiac health muscle if we wait until the patients are just really suffering we've got to do it on the front end what i would like to

56:52see at these centers would be the minute that patient is told like okay the next step in your treatment is now we're going to move into yes lead them yes so and i get it it can't happen all at once you get the diagnosis you got to see the you know the breast surgeon the plastic surgeon you plan you know your surgery what you know chemotherapy or other treatments you're getting and that's a lot to manage but if they could just get the message up front that listen some some time in this treatment you know you're we are going to move into this phase where you might have premature menopause or you know medication induced menopause but don't worry when we get there

57:26we have a whole team of how we're going to help you manage that and we're going to go through the risks and benefits and we're going to support you don't be afraid but women are petrified of this and sadly some women even refuse these treatments which i get it because they're either suffering and so they stop early their endocrine therapy the the rates of endocrine therapy compliance are only about 40 percent some studies quote even higher because women have a very hard time with the side effects not all women do some women do okay some women are well managed but there's a percentage

58:00of people who just and i feel like half the time when patients come to me for the this this help and maybe even like oh could i ever consider hormone therapy sometimes half of my job is just helping them stay on their tamoxifen helping them stay on their aromatase inhibitors because they have a real value and a benefit and then other times i'm like wait do you has anyone explained to you that for you in particular you know the percentage value that you're getting from that is not that much and this is causing you a lot of damage so like there's a spectrum there right um but what all of these women

58:34would just want is some recognition that it's more than just a little hot flash and dryness and that their concerns about their long-term risk of dementia heart disease bone health etc you know are valid they're valid and i get that like the metastatic breast cancer can kill you and for some women that risk is so significant that that's where we're focused our attention but with earlier diagnosis and people doing better living longer we can't ignore this whole other side um and and and that's

59:05really what i faced and the decisions i had to make for myself when i had to balance all those things um and um and so i i wish these centers would would just have those resources it's actually not that hard i mean you say it's not hard and i i get that and i'm completely with you but now just hearing everything and all this stuff going through my head it's like it's so individualized you know we've got you know 51 of the population are female we are and we're all different yeah okay imagine that and you're saying three to four percent of the female population will be diagnosed with no with

59:40earlier menopause with premature menopause and six to 12 percent um with early so premature and early and so um again i use the breast cancer patients as an example because i think they're the ones who are have it kind of the worst right um but again you know there's a whole you know segment of the population that has similar concerns right yeah and the reason why i brought you here is because whenever i do a podcast focused on hormone replacement therapy a lot of the women in the comments are saying hey i'm positive for this and i'm positive for that and i can't take this and

1:00:11so if a woman is on tamoxifen right and would that be for the rest of her life maybe no tamoxifen is either given for five to ten years yeah it's not it's not permanently but but but remember when the tamoxifen ends many of these women are then either already in menopause due to chemo or they've had their ovaries taken out but can you do hormone replacement therapy and be on these drugs at the same time no we we we don't give systemic estrogen and progesterone typically with women on tamoxifen

1:00:42aromatase inhibitors certainly aromatase inhibitors they don't work if you it requires an already low estrogen state i'll go out on a limb here and tell you that for women who are on tamoxifen um the standard of care is certainly not to give them systemic estrogen and progesterone could it be done yeah it could be and in fact in the early studies of hormone therapy hormone replacement therapy after diagnosis of breast cancer the habits trial um the stockholm um and uh the

1:01:15liberate trial um in all of these trials easily at least 30 to 50 percent of the women in the trial were on tamoxifen um and i just kind of throw that out there because we have to think a little bit big picture in common sense pre-menopausal women who were taking tamoxifen and i was one of them for many years i was still pre-menopausal and i was on tamoxifen not many years but a few years so i had my ovaries were producing tons of estrogen i was ovulating every month you know i had progesterone being produced and tamoxifen was being given to me and it was blocking estrogen receptors

1:01:47so all right we can put our thinking caps on why is why is that different than someone who is maybe on tamoxifen and maybe they lost their ovaries or they're in the late part of perimenopause and they're really suddenly now having a lot of why couldn't we give her a little bit of progesterone orally at bedtime why couldn't we give her a little bit of transdermal estrogen now it may not help as much for her because the tamoxifen is blocking receptors but theoretically it it shouldn't be completely off the table and in fact they addressed this in a really important piece that was published

1:02:20in the menopause journal this january by sarah glenn and her team it was a kind of a consensus um review of how to approach these very hard questions about menopausal hormone therapy after breast cancer right um the hormone therapy local hormone therapy vaginal hormones we already know tamoxifen aromatase inhibitors anything in between you can use local safe vaginal hormones what we're the bigger question is these systemic hormones and so just like breast cancer is treated

1:02:52individually we're going to look at that patient individually right are you a triple negative patients and you don't your you know estrogen deprivation was never part of your cancer treatment right you may have had years of normal periods and now you've gone through natural menopause or maybe you're a BRCA1 carrier because um triple negative breast cancer is more common in BRCA carriers so those patients um suddenly face an abrupt surgical menopause from their BRCA but it had nothing to do with treating their breast cancer but because they have a history of breast cancer no one will talk to

1:03:27them about hormones like it doesn't make any sense these women went years with normal periods so this is my one example of how we we have to look at these women individually right um i was just at a lunch and uh this woman next to me says oh you know i follow your podcast can i ask you some questions so her mother had um had dementia she had alzheimer's disease this woman i think you know i didn't ask her age but she would have been you know in her let's just say late 50s she went to three neurologists here in new york and she said i have learned about the p tau 217 and the amyloid beta ratio test i want to get

1:04:03this done she got turned away by three neurologists all because i kept i was really what are the reasons the reasons for all three of them was simply it doesn't matter because if you've got it if you do have an elevated um ratio and you've got tau in your brain there's nothing we can do so there's no point i don't want you to go and get you know you're you're older now i don't want you to go on and you know fuss and stress over nothing because there's nothing we can do about it but that's not true i went i was livid and so i'm actually going to do a reel on this i know i wish she could be part of

1:04:33it right um but you know it just i couldn't believe it i was so shocked and so she went out by herself and she found that you can do it you had to pay for it but she went and did it herself and she's like but i've got the results now what do i do i was like okay that's a whole different ball game but it must that's what women are dealing with now yes and and the thing is is that even all the things we talked about is scary and from your work and what you do with the dementia and mine with breast cancer these women deserve to know what risks they have and that there are

1:05:06actionable things we can do and maybe not everybody can do i always tell patients there's a buffet of choices of how we're going to deal with this right some people can choose these things some people can choose these things some people can choose them all um and some people have different comfort levels with these different choices or motivations but you all deserve to be told what your risks are that you're facing not just for your breast cancer but for everything else um and what choices you have um and if we tell patients that there's just not enough study we don't have enough data on this

1:05:38we have to wait i don't know enough you know what we're big girls we can handle that like okay there's limited data on this for you this applies to you in this way and you can make an intelligent informed decision about you know what's the best way forward right and so it's kind of how i i try to explain it to women about things like testosterone after breast cancer or making a decision about menopausal hormone therapy after breast cancer we don't have perfect data we have some data we can also like put our thinking caps on and say like what's the best way to approach it for you right but really

1:06:13don't get that they get like because nobody one size nobody owns them that's why yeah that's yeah no i completely get that i i we're coming to the end but i want you to share some positive stories of um if you if you can um of a patient that um has you know probably been through hell but now she's on the other side okay well i'll give you a i'll give you a story about a young woman who um she's my my friend and she was diagnosed um also at 28 her sister was the founder of the young survival coalition uh one of the founders and um she was a brca1 carrier

1:06:46and she was going in for a prophylactic mastectomy and at that time she found out that she actually already had breast cancer and so she had an early stage breast cancer she went through um chemotherapy and she uh you know had a temporary premature menopause that was hard she preserved some embryos prior to her treatment and she went on to have um two beautiful baby girls lots of um you know normal ovarian function and then a number of years later she had ovaries removed and she struggled bad for

1:07:20two years because nobody would help her and guess what now after empowering herself and learning she learned what she needed to do from a lifestyle medicine you know way to um vaginal hormones to we got her some testosterone and she's actually with the support of her medical oncologist on menopausal hormone therapy and she's doing fantastic um and so she's living her best life and i'll just kind of contrast that with also i have a lot of breast cancer survivor friends and

1:07:55patients who are in menopause and will be in menopause forever and they can't take systemic hormone therapy because of their particular case um but that has motivated them to take charge of their health in every other way and they're frankly fitter healthier more vibrant more purposeful and more driven than a lot of the average menopausal women i see because you can't outpatch a crappy lifestyle and kind of just a sedentary life so i know these things sound scary but you have the power and

1:08:28you need to be a squeaky wheel to demand the care that you deserve oh my gosh you're you're brilliant i i keep i've said that probably like how many times today thank you so much are you um do you accept any patients yes i do okay and i do a lot of consults um for patients um even with their doctors um so direct care but also a lot of just like educational consults where i'll get them set up and then i'll send them on their way i do them in other countries and other other states because um i need to empower them so that they can work with their own physicians yeah in their community um

1:09:03because there's only one of me i think yeah i think that the future of medicine can be like a board of directors yeah totally neurologist with you as well yeah yeah totally everyone absolutely and i i tell patients this all the time listen these breast cancer patients in particular curate your team wisely and what you start with is sometimes not who you stay with i i switched my my care about through the years um this is my i'm 25 years from diagnosis this year yeah um and so i've seen it all i've seen a lot of changes and a lot of great positive movement um but i've learned along the way that

1:09:36in in the end you gotta you gotta rely on yourself if there was one thing that you could if you got granted a wish for changing the state of the of the current medical industry in in your specialty what would that wish be um i think i just would wish that we would value ovarian function beyond our reproductive capacity because what i see is that um everything that i experienced as a cancer patient

1:10:08when it came to my ovaries was about how could we protect her ovaries from failing so that she could have a baby but once that reproductive fertility concern was done my other concerns about what that over ovarian function loss was for me was just no one really thought about it being important and so i just think that we're not valued beyond our reproductive capacity and if we were valued beyond that in medicine it would it would be a you know a good thing wow here's to you my friend thank you so much for

1:10:44coming on the podcast thank you for having me

1:10:54thank you