10 years out and looking at bioidentical hormones
Hi All. I'm 10 years out. IDC, ER/PR +, no lymph nodes, double mastectomy, chemo, 5 years Tamox, full hysterectomy. My life has declined due to lack of motivation, energy, zero libido, weight issues, etc...I am not depressed (have had that and on med for that). Friends told me about bioidentical hormones changing your life after menopause. I asked the oncologist I went to for treatment and he said it 'should be fine". My current onc in my city now doesn't know-she would be furious I even considered it. I have no kids so I'm not trying to live to be 100. NOT that I want cancer again or to die. But the point is there are a lot of things worse than death. Like a stroke with loss of limbs (I have hypertension). Or living a life that is colorless because of what cancer left me with. Am I crazy to consider this after 10 years of even avoiding soy? Is there anyone that is using the bioidenticals after breast cancer? Thanks for not judging! 
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You are not crazy. I am 39 and was thrown into menopause at 37 from chemo. I feel awful. Like an old, old lady. I'm 2 years out and am looking into taking bioidentical hormones. I also rejected tamoxifen.
i should never have done chemo
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snapple7:
I understand the desire to feel like your old, younger self again. I miss my younger self as well and I do have my moments where the thought of going off of treatment and taking HRT to attempt to resurrect my former self crosses my mind.
But I know that if I were to do that and my cancer were to return as MBC, I would regret it.
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Has anyone tried to use Testosterone+Anastrozole implants? I started Arimidex+Lupron in March this year. I'm going to find an oncologist who has experience with similar implants to get a second opinion.
https://ascopost.com/issues/october-15-2014/testos...
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Snapple7...I totally agree! QOL does matter! I have contemplated bioidentical hormones many times. Unfortunately I cannot get an unbiased opinion from any conventional MDs. They just don't know enough about them. Good luck with your journey. Please keep us posyed
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Since I am pretty sure my long time use of birth control pills and then HRT after menopause lead to my BC diagnosis in the first place, I personally I would NOT take any sort of hormone, bioidentical or not. I did chemo, rads, 5 years of AIs, and also had a hysterectomy. My life is colorful, full and fun......really better than ever. Instead of thinking that hormones will somehow make your life better, I would encourage you to spice things up yourself (which is, of course, harder now with Covid). Exercise, to me, is THE key. If you exercise you will look and feel younger. You will have more energy, your skin will be firmer and brighter. If you can find some friends to exercise with, you will be with a group of people who are positive and motivated. You can also eat more if you exercise, which is a big plus for me because I love food! If you make fun plans and carry them out you will feel younger and more excited about life. I have been doing lots of traveling to new places and trying new things in the last 12 years. With Covid, I have been exploring state parks, game preserves, historic site and scenic byways close to home & that has been unexpectedly interesting. Get in touch with old friends. If you can safely meet up in person, do so. If not, set up Zoom or Facebook Messenger Happy Hours or Coffees. Read, attend lectures and/or take classes online. Buy young clothes, get a good haircut, get good moisturizers, buy good makeup & wear it when you go out (even under a mask). Get a pet, volunteer at the Humane Society, find a cause you believe in and work for it. Purposefully fill your life with things that are interesting and meaningful to you & see what happens from there.
Sorry, I know this sounds like/is a lecture, but this is what has worked for me.
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Thanks everyone!
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I'm pretty sure the 18 months of wearing an estrogen patch on my abdomen led to my breast cancer.
Even though I would love to sleep better, not struggle so hard with weight management, enjoy sex more, not get UTIs every other month, not feel like I'm 90 when I get out of bed...I'm with WC3 and Ruthbru, I wouldn't consider taking any hormonal medication. I would always wonder if there were sleeping cancer cells in my bones, liver, lungs, and if feeding them estrogen was going to flame them into roaring fire.
But we're all different, and we have the right to choose our own path.
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I second what Ruth says. It's all about exercise and keeping your brain fresh with new experiences. I often combine both, exploring new places on my bicycle or skis. Since I didn't get to travel to Scotland and back to Vermont this year, I figured out new adventures, one of which has been helping out at the vineyard/winery where I know the owner. They need help, and I get a ton of exercise. Plus, I have learned so much about winemaking in the past 2 months.
Exercise also replaces much of the lost estrogen naturally. I do not feel like I am 90.
I live in an over 55 community, and I see so much unnecessary suffering if only these people had realized that exercise was important. The good news is that it's almost never too late to make an improvement in this area.
That said, if the problem is that the lady parts are in need of a bit of attention, they do make topical creams containing estrogen which do not appear to increase risk of recurrence (prescription required). I would be tempted to go that route if needed. With plumped up lady parts and a buff body....oh my!!!
And a big YES to makeup, hairstyle/color, and clothes.
So Snapple....I think that your your life could do with a bit of rethinking, preferably out on the exercise path or jogging trail. I get out every single day. Yesterday, I walked more than 5 miles and did my routine of weights and crunches. This keeps my brain in tip top form in addition to the other benefits not to mention that it improves my mood.
And don't let a spot of hypertension get in your way. Just make sure it's controlled and get moving.
You won't be disappointed. - Claire
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I walk 4-5 miles or ride my mountain bike 10-15 miles every single day, rain or shine. I do weight training and yoga. And I've been on letrozole for 8 years now, which is responsible for stiffness, aches, weight management difficulties, lady bits issues. My onc is still on the fence about stopping at 10 years or continuing it for life. Right now, I would rather keep any sleeping cancer cells solidly asleep by continuing letrozole, and I'm willing to work around the side effects. If I weren't as active as I am, the joint pain and stiffness would be much worse.
Topical estrogen creams are still estrogen. I know some medical experts opine that they're safe for survivors of ER+ BC. But in 2009 I was also told that my risk of developing breast cancer from hormone replacement therapy was negligible, and here I am.
Again, we're all different, and we all have the right to our own decisions. What's right for me might not be for someone else.
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Claire,
How does your theory apply to someone like myself who was thrown into menopause unnaturally at 37? It's not natural to be in menopause at this age. Actually, it poses significant health risks (both mentally and physically) that cannot be turned around by exercise alone. BtW, I am thin and fit. No amount of exercise will help my stiff joints, hot flashes, lack of libido, dry vagina, brain fog, etc. This is not normal and acceptable at my age0 -
Testosterone looks like an interesting substitution for estrogen and it may help overcome the collateral damage done by the absolute elimination of estrogen. This issue goes beyond libido, for instance our brains need hormones and we don't know what the longer term costs will be for those who manage to survive bc.
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Fuk - I beg to differ. Exercise does in fact help stiff joints - and likely helps clear the brain fog too. You should b e on supplements to prevent osteoperosis. I have a Prolia shot every 6 months. Others take oral biosphosphonates. There are a number of thread that discuss vaginal issues. People have had success. Check the search area.
You have not listed your diagnosis & treatment, but I'm assuming you are ER/PR positive and that's why you're concerned? Please go to 'my profile' and add your information so we will be better able to answer your questions.
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fukcancer says she is thin and fit. to me that reads as she exercises quite a bit and it is not helping. goodness knows she might feel even worse if she was not exercising.
fuk have you tried going off for 2 weeks then starting back on a half dose of whichever drug you are on? I have a real problem with this one size fits all mentality. These drugs are only produced in one doseage and only prescribed in that exact dosage, regardless of BMI or metabolism. Some people need more of a drug to be effective because they don't have the right pathways to utilize the drug effectively. Others utilize a drug very efficiently and need to take much less. Also frustrating is that supposedly they do not monitor our estrogen levels because the commercially available tests cannot detect estrogen at that low a level. Well then, how do they know the standard dose is doing the job? Maybe its not bringing the estrogen down. Maybe half a dose would have done the job. The need an effective estrogen test, and they need to make these drugs in different doses. This is NOT good science. Instead of testing different combinations of the same old chemo drugs, maybe they ought to start looking at developing the lab tests for estrogen, and study patient/doseage/estrogen level responses.
I know that I am on a bandwagon here, but as a scientist this just bugs the daylights out of me. It is not good science, and it is not good medicine. They do the same thing with radiation. Everyone gets the same dose, spread out the same way. My RO uses the Canadian protocol and everyone she sees gets the same treatment. The only individualized part of it is how they direct the beams specific to your body to hit the right parts. Again, this is not good science. And it is not good medicine. But the doctors don't want to experiment because that is considered unethical if you are not offered "standard of care" and something goes sideways. But this is something that needs to be studied. It is bad enough that all the treatment options are toxic, but if they can refine the treatment so we get just what we need to be effective and not a bit more, at least that should be some emotional comfort. And I have to wonder if the side effects would be much less if dosages were tailored to the specific person. Maybe the people having the really bad side effects are the ones who dont need that high a dose to be effective. Maybe the women who have no side effects are not getting enough to be fully effective for them. They don't know, they can't tell us.
The above being why I am suggesting that if you qol is decimated, talk to your MO and see about getting off, letting t clear your body, then start back at half a dose, or even a quarter, see how you handle it , and then increase dose gradually to see how much your body can handle.
Good luck to you, hoping you find relief. And at 37 your lady bits need to work, way too young to give up on intimate life. there is a thread on here somewhere about some non hormone cream that supposedly helps alot.
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That's news to me about the radiation, because the radiologist told me at our initial meeting that I'd have something like 22 sessions. After surgery which found micromets in my sentinal node, that plan changed to 33 sessions. When the mapping was done, he explained that it's all very personalized, based on size, location of the incision(s), weight, type of tumor, and who knows what other factors, which is why the mapping session takes quite a long time. It was certainly not one size fits all.0 -
I agree with what you're all saying. For one, I was a poor metabolizer of Tamoxifen and had absolutely no side effects for 5 years on it except polyps on my uterus several times which led to a full hysterectomy. Some say if you aren't having symptoms from Tamox it's not working well. I don't know...they didn't measure the levels when they did that huge study. I could not handle the AI after the hysterectomy.
I totally believe in nutrition and exercise and that for sure is something I have lost during covid. But you have to have the energy and motivation to DO it and that has been the issue. I know that clean eating is very key to brain health. And exercise is a medicine in itself. I am going to pledge to you all as sisters that I will start back on that. Even if I hate every second of it. Which is how it is until you get used to it. I wouldn't have so much trouble if I was in CO and could hike! My best friend from college lives in Telluride and there I would be outside every day! But I live in a hot, humid climate that is not motivating. Daily outside time isn't pleasant until January. UGH!! But the arthritis and climate and all else is excuses. My oncologist told me 'there will always be something that hurts but you must push through it' meaning in general...not just with cancer. So maybe I'll try the healthy things and see if that helps. Thanks for the encouragement!
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Remember it takes 6 weeks for something to become a habit. Commit yourself to 6 weeks and you might find that you actually end up hooked! I have the opposite problem with the weather here. We are heading into our long, brutal winter season, when outdoor exercise can be very unpleasant or even dangerous (frostbite). Luckily there are indoor options when it is too hot or cold (including many free online videos). If you want some exercise buddies (including Claire & me), check out the Lets Post Our Daily Exercise thread on the Fitness Forum.
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I need to dig out my fleece cycling tights as in the high 30s here this morning. No ride into the mountains today as below freezing and I don't want to wipe out on ice. But the valleys should be fine. Parka and ski gloves time too.
BTW - a bicycle is cooler than other forms of outdoor exercise when it's hot. You generate your own breeze. I also find that I can tolerate warm temperatures a lot better if exercised.
Snapple...you will notice that I don't "exercise" per se. I do things that I enjoy doing. I cycle, walk, hike, ski, and swim in the river if boiling hot. Well, I also do weights and crunches to keep everything firm, but it isn't my main form of exercise. Thursday, I snuck in 2 extra miles of walking by doing errands on foot. This was followed by a 3 mile walk for a total of 5+ miles.
I am often less than excited when starting a walk, but about half a mile in, I will have endorphins kick in and then I will feel pumped and amazing.
A final comment on exercise. Sometimes some added benefits. A friend and I did a walk in the off leash area followed by beers a couple of days ago. Along the way, we picked some apples off a couple of trees next to the path. Very tart but fine for cooking. I made pork with onions, apples, and sage; he just made an apple cake for his son's birthday (texted me pictures). Apples were perfect for both and it's always more fun when you picked them yourself.
Beers were chilly as it was 43F when we departed, and no outside heaters. Anyway, the dogs had a wonderful time and so did we. I think that everyone slept well that evening. I certainly did! - Claire
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hi ladies,
interesting discussion. i just started taking Duavee last night which is .45 conjugated estrogens with 20 mg bazedoxifene. Conjugated estrogens are of course not bioidentical but i have my uterus and micronized progesterone and most progestins give me severe migraines so i'm really hoping i can tolerate Duavee.
Also there's currently clinical trials in the US using Duavee for DCIS patients which some women may find interesting.. i'm not allowed to post the link but it's on the cancer.gov website
The 11 center trial is only for post menopausal DCIS patients but the one in Kansas includes peri-menopausal patients...
Please correct me if i'm wrong but i think Bazedoxifene should help protect both the uterine lining from building up/ growing endometrial cells (which tamoxifen does not do) and work similar to Evista in the breasts and w bones; i don't think Evista protects the uterus or I would be able to try it perhaps with a low dose bioidentical estrogen patch. I've read about other women on here taking Evista that can't tolerate Tamoxifen. If i don't tolerate Duavee i'll inquire more about Evista.
Fukcancer and snapple sorry y'all are suffering. Unlike y'all i did not have invasive cancer, only high grade 3 DCIS, treated w a double mastectomy so my risks are very different. The double threw me into severe menopause at 40 and my ovaries/body never bounced back. My medical team is ok with me trying low dose hormones only bc i had the double w DCIS and bc like Fukcancer said they know the risks to my heart, bones, brain, etc need some estrogen at my age and bc i'm suffering.
Hope everyone can find ways to improve their suffering / quality of life and stay cancer free. Anything outside in Colorado sounds heavenly btw 😊
best,
izzy
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I'm using vaginal estrogen (10mcg) or using the Estring, which most oncologists "allow." I'm nervous about full-on hormone replacement, especially since the 10 year AI regime is showing encouragement.
I read somewhere that starting estrogen past menopause could lead to dementia in some women, so there's that.
Life is always about weighing the risks and doing things for longevity AND QOL. Hope you can find someone who can point you to a path that is comfortable to you.
And not that Suzanne Sommers is any role model, but she had breast cancer and is a huge poster-girl for bioidentical hormones.
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I've read some her Suzanne Sommers books. She starts out sounding sensible but as you dig in deeper, she is pretty off the wall. She takes 60 (plus) different supplements every day (not counting the bio-identical hormones). She has her husband on all kinds of pills too. Yikes.......who could afford that even if it weren't dangerous? It apparently works for them, but I wouldn't have time for anything else if I had to choke down all those pills all day long!
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Snapple7, have you considered consuming foods that contain isoflavones (found in soy products)? This may be a safer first step than jumping to bioidenticals. Isoflavones have a chemical structure that resembles estrogen. When eaten, Isoflavones have weak estrogenic activity, and help alleviate menopause symptoms. Check with your doc to make sure it's safe. Natto (fermented soy beans) is the food that is highest in isoflavones. It isgood for gut health (b/c it contains probiotics), and good for heart and bone health (draws calcium away from cardiovascular system and deposits it in bones). Natto is a Japanese staple, and the Japanese have the longest lifespan. Many think Natto may be linked to the good health enjoyed by the Japanese.
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hey snapple did you go on bio identical hormone cream? I’m using testosterone bio identical. Very low dose. My MO supports this with studies that are out. Also there are three types of estrogen and one she says is safe to go on. Bio identical. But as of yet I’m not ready to try that. Testing blood to make sure my levels are ok.
Update us when you have time.
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Jon's Girl. Snapple hasn't posted anywhere on BCO since October.
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hi! I wasn’t getting notifications so didn’t realize anyone had responded to my questions. Sorry! But yes, I am on them. Scary to even say that out loud. But I’m on patch of estradiol and cream of testosterone. But have decided to do pellet. My original oncologist at Duke (2 of them) said it ‘should be’ fine. My current oncologist, who is local to where I live) would absolutely have a fit about it. But I’m not telling her. I know I will have to when she draws labs. I dread it. But I feel so much better. Snd I’ve decided I accept the consequences. I’m 58 next month. No children. Both brothers had severe cardio problems. One had a quadruple bypass. The other died of a blocked artery/heart attack. 57 years old. So the benefits to me are significant. And the quality of life. I want to live fully while I’m here. I am not afraid of death, but am afraid of living too long or of lingering from a stroke. I believe fully in my Father in heaven so when I do go I will rejoice to be with him. I’m not trying to go early. I pray this is a good decision. But we all balance pros and cons and risks and benefits. The one thing about breast cancer is that it is not a one fit resolution. There are million choices. We all do the best we can with what it leaves us with. I hope snd pray I’ve made a decision that is ok. I wouldn’t do it if my original docs didn’t say it should be ok. Good luck on everyone’s decision. It’s so hard. Every day it reminds me of my loss when I step out of the shower. Everyday I grieve what I lost. My breast, my uterus and my ovaries. But every day i will chose to keep going and win anew each day! We are all s warriors! Kudos to us all!!!
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Thanks minus two for letting me know.
Hi Snapple!
Wow that's great to know your doing well! Thank you for updating us on how you are doing.
I'm using testosterone cream but I'm on a very low dose. And I'm not noticing much difference I don't think. I had my hormones checked again. Waiting for estrogen results.
My MO both said there is a estrogen that is fine to take. There are three kinds. But I'm pretty scared to even consider it. I was very high both er and pr my tumor.
Thanks for sharing how your doing. I hope all continues to go well for you.
Blessings
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Internet sources warn against any HRT, systemic or local, for women with a history of breast cancer. Some state that vaginal estrogen doesn't significantly raise systemic levels of estrogen and are "probably" safe. I don't care. HRT got me into this cancer mess. After almost 10 years on letrozole, my urogenital system probably resembles a 100-year-old woman's, but as much as I'd love to ease the atrophy issues with a little estrace vaginal cream, I'm not willing to risk it.
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The internet is not always the most reliable, up to date source for information. I felt that way also for 10 years so I get it. But after 10 years and then struggling to function, be a good wife, a happy wife, a energetic person, I’ve made my choice. We all have to do so. I get where you are. I’ve been at that attitude. That fear. But please don’t judge. You can’t know what others walk through or what others’ factors are.
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Thank you! Blessingsto you on your journey also!! ❤️❤️
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Snapple, I'm not judging. Everyone has the right to make their own healthcare decisions, based on factors only they themselves fully know. I don't know what it was about my post that made you feel judged, or that I'm afraid. Neither is true. You are free to make your own decisions and express your own opinion, and so am I.
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snapple- I applaud you for choosing a life of color over a life with no hormones, which is completely unnatural. I urge those that have had different experiences to not assume their body’s response to nutrition and exercise works for all. I have struggled with hormone imbalances since a severe car accident sent my endocrine system wonky at 41. My thyroid became hypo and developed nodules and I went into early menopause. It was swift and sudden. After 12 years of traditional HRT, I was still depressed, hot flashing, 30 lbs overweight, paying a trainer and working out HARD 4 days a week, and had such brain fog I could barely function in my exec job. Libido was zero. I hadn't had sex with my husband for 6 years. I didn’t want sex with anyone. My skin drooped and became crepey within the first year. Gray hair came in fast. Vaginal atrophy was swift. Lost most sensation there and began wetting my pants. At 42! My mid section and back became a thick barrel. Cellulite covered my arms, stomach, butt and thighs. Depression meds did not work. Weight, libido and motivation did not change when depression meds stopped. I was irritable most days and downright raging on others. PMS on steroids! It was cruel and unfair. I aged 20 years in just 2, lost the life I had and felt mentally ill most of the time. My poor kids lost the fun, crazy, smart, beautiful, loving mother they knew. So did my husband. And my friends and colleagues. And me. I truly lost myself and tried everything to find my way back.
Fast forward 12 years and I switched to bioidentical hormones vs estradiol patches, prometrium and a smidge of oral testosterone. Within days, I felt better than I had in 10 years. Mind was sharp. Drive and motivation back. More energy to exercise. Weight began melting. Vitality began to return. Libido, wetness and sex returned and is incredible. I want it. Face lifted itself some. Skin elasticity and dryness improved. I was thinking and working again. Just on fire! In short, I FINALLY felt normal again. And vital. And GREAT!
5 months into that and I have endometrial issues (pre-existed on traditional HRT) that have escalated and need a hysterectomy. Ive also been diagnosed with ILC in both breasts and have surgery for double mast ahead. As much as I mourn the loss of my breasts, I am absolutely despondent about the prospect of hormone blocking therapy. I had a decade of hell that no amount of exercise, sensible eating, evening primrose oil nor meditation could change (no offense to others in the thread, but what works for some is often no help to others). Some women hardly notice menopause. Some women’s lives are destroyed by it. Hormone needs and balancing is complex. There are men who have more estrogen and more feminine characteristics. There are women with less that are stronger and athletic. Some people never have clinical depression. Some suffer lifelong with it.
There are so many great docs and scientists out there and much progress made. However, following the money, one will see that docs and clinics are making big $$ pushing non FDA approved bioidentical pellets (again, I am a believer, but health is a biz). Pharma companies make money by supporting recommendations for 5 yrs of blocking therapy with research. Then, more research suggesting 2-3 or 5 years add’l is beneficial, so 10 years is ideal. See how easy it is to take a group of drug users and increase the revenue by 150%-200%? It’s the old adding “repeat” after “Shampoo. Rinse.” directions. Doubles product use and doubles sales. They’re making gobs of cash and “saving lives”. If they can build a case that a lifetime of meds is safest, they will -with no consideration as to how miserable they are making these women and the people that love and need them. (Like alcoholism, mental illness is a family disease and my menopause caused chronic, severe depression that impacted everyone)
I don’t know who’s right, but I know who’s wrong-it’s the docs (and well meaning friends, family, therapists, et al) that tell you to just count calories and exercise more. Or to try some new lingerie to get you in the mood. Or eat soy. Do yoga. Take an antidepressant that further reduces libido and increases weight gain (which offsets any mood lift meds may bring). It’s the ones that tell you living life in grayscale is better than no life from cancer. Just start walking and snap out of it. That seeing grandchildren born and children marry is worth every dull, miserable, bland, foggy day with sweat rolling down your overweight back while you sit-trying to write in your gratitude journal Oprah said was important. Trying to eat 1000 calories/day and walk miles because that latest app has all the new weight loss magic. That wearing pee pads is just a little inconvenience in your 40’s. That your career isn’t over because you can hardly accomplish a grocery list much less craft a strategic document or lead a team. That your husband will be loyal and devoted to his wife that fast forwarded 20 years practically overnight. That if you’d just exercise more and try some new makeup, a fresh haircut and clothes, you’d feel better about yourself and in the bedroom. Your marriage will be fine. As in, it’s YOUR fault-you’re just not adapting and working hard enough. Women do this all the time...why can’t you??
Don’t get me wrong-I want all those future things and want to live. But I want to see my grandchildren in color and enjoy the days leading up to it-and enjoy those babies and my growing family. It should be a grand adventure. I’d like to find love again after the loss of a 25 year marriage complicated by unplanned, early menopause and zero zest for life any longer. I know I have decisions ahead based on tumor genetics, but having been there and returned to vitality for a short time, living life without hormones is like knowing I’m going to lose all my limbs and be confined to a bed -“but you’ll be alive” the crowd cheered! Right now I feel stronger, happier and more vital than ever-having some fun dating-and just dread losing all that again.
Lastly, I don’t think the bio hormones caused these issues. I think it was over a decade of synthetic “traditional” HRT. The bios worked in a profound way that the other, insurance approved meds did not. I was only on bioidentical for 5 months. While I have no science to support it, I think if I’d spent a decade on meds my body absorbed, recognized, used appropriately and eliminated efficiently, I wouldn’t be in this mess. It’s years of storing up meds my body didn’t know how to use -which just created issues in uterus and breasts that showed signs of “estrogen dominance”, yet never relieved my low hormone symptoms. So docs just upped the hormone dosage trying to muffle symptoms rather than finding the root cause. For a decade! And told me to exercise more. And here i am.
So, snapple-hooray for you for 10 years behind you, caution, wisdom and making your own brave choices! Know that when you say you’d rather have a shorter, fuller life -or a healthier heart in exchange for some risk, there are women who get it. If your oncologist badgers you without listening, discussing risks and making shared decisions-you have the wrong one. If your oncologist disagrees, but supports your right to choose-he/she will recommend starting slowly with lower doses, stay on top of bloodwork and other early screening that might signal problems. This is no different than weighing options and saying no to chemotherapy. It is your body and your right. Don’t be bullied. Be smart, listen to docs, get 2nd, 3rd, 4th opinions, research, find studies-then choose your path, be happy and be well (but cautious)! Please keep us updated on your journey and outcome
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