ER+ with no ovaries???

WenchLori

My path report came back as ER+ and I had a complete hysterectomy in 2010 but still developed breast cancer in 2016. All of my mammograms were clear up until 3/2016.

I see a lot of women posting on various topics/threads that their doctor has recommended having their ovaries removed to block recurrence of BC. My estrogen pump has been gone for 6 years but here I am.

1) How many ladies out there developed ER+ BC/recurrence after having hysterectomy/ovaries removed?

2) How long between hysterectomy and development of BC?

3) Why do doctors believe that removing the ovaries help prevent BC?

4) How long do your ovaries need to have been removed for you to stop producing estrogen?

5) What is in our diets that would cause estrogen to develop? (I don't eat hormone feed meats etc)

This inquiring mind wants to know.

Thank you

SpecialK

I was diagnosed with strongly estrogen receptor positive breast cancer 9 years after a total hyst/ooph. Important to note that the percentage of positivity is not a measurement of estrogen levels - but rather a percentage of cells that have receptors. You could have strong receptor percentages but low estrogen. Some oncologists advocate removal of ovaries for at least two reasons - in someone pre-menopausal, still producing estrogen from their ovaries, oopherectomy obviously reduces the amount of circulating estrogen, at least in theory - and, removal of ovaries, or ovarian suppression, allows the patient to use aromatase inhibitors rather than Tamoxifen, which some docs think is a better recurrence prevention option. Ovaries are not the only avenue of estrogen production. Estrogen is created by the adrenal glands and body fat by the action of aromatase conversion of androgens, so removal of ovaries does not affect this supply of estrogen in post-menopausal women - thus the need for aromatase inhibitor drugs. There is a lot of information available about estrogen and diet but not as much consensus about how this impacts breast cancer patients.

Icietla

WenchLori, when you had your hysterectomy, were your ovaries removed also?

ksusan

You might also have had an undetectable small cancer before you had your ooph.

SelenaWolf

My mother was diagnosed with 100% ER+ breast cancer, 34 years after a complete hysterectomy. Unfortunately - as women - our bodies can still make estrogen without ovaries.

WenchLori

Thank you all, I love learning new things everyday.

SpeacialK, I wish they'd do an in depth study on this subject. I kinda knew that our diet was involved at some point, and I hadn't been all that interested in this subject until I woke up with it in my head this morning. I'm still not sure where it came from? I won't learn anything if I don't ask. It's been a trip trying to get my head wrapped around everything concerning BC. I have every intention of making the best of it.

Icietla, yes, my ovaries were the main reason for my hysterectomy, they were the size of lemons. Hhmmmm

At this point I have no intention of doing HRT, maybe I should rethink that at some point. I had HRT at the time of my hysterectomy and no one wanted anything to do with me. Talk about being bat schit crazy!! There were days I tried hiding from myself. It was (I was)horrible!

ElaineTherese

Lori,

Your doctors probably won't prescribe hormone replacement therapy, but rather, hormonal therapy. The two are not the same. Hormonal therapy is about reducing the production of estrogen, not replacing it. (I'm on Aromasin for this purpose.) Hormonal therapy may make you crazy, but you never know until you try it!

SpecialK

wench - you might ask to see if you can have your hormonal levels checked prior to treatment. Just because you have had your ovaries removed it doesn't mean that your estrogen level is nil. One of the reasons I don't think there has been much study of diet is that it would need to be done prior to diagnosis to see if there is an effect, and I don't think at this point it is thought to be significant enough to warrant intense study. Your docs won't prescribe HRT - that would be adding estrogen to your system - it is replacement estrogen - not what you want! Anti-hormonal drugs, Tamoxifen or one of the three aromatase inhibitors - do the opposite either by blocking the receptors (Tamoxifen), or suppressing estrogen (aromatase inhibitors), and these are prescribed for ER+ patients for at least 5 years following surgical and/or systemic treatment.

WenchLori

Thank you SpecialK and Elaine for clarifying things for me. I keep getting things mixed up, it must be Monday!

Blessings2011

WenchLori - four weeks after my BMX, I met my incredible, awesome Oncologist. The good news was that my tumors were early, tiny, Stage 1A, no lymph node involvement, and clean margins with the surgery. I got to dodge both chemo and radiation.

The bad news was that the cancer cells were 100% ER+, and she immediately prescribed Arimidex.

I remember SO clearly sitting across from her, arguing... "You don't understand. I HAVE no estrogen in my body. I had a complete hysterectomy 13 years ago. I've been post-menopausal for 14 years. THERE IS NO ESTROGEN IN MY BODY!"

She very sweetly smiled at me and said, "Even after menopause and hysterectomy, estrogen is still produced in body fat."

At that point, I was more than 50 pounds overweight, and there wasn't much I could say. I went on a medically supervised liquid diet for four months and eventually lost 60 pounds. I returned to her office (she had give me a reprieve on the Arimidex while I was fasting) and said "O.K. No more estrogen!"

Unfortunately, she explained more in detail about what SpecialK wrote at the end of her first post above, and said to pick up my prescription on my way out.

SO: post- menopause or having no ovaries do not equal "no estrogen." Sorry....

WenchLori

Blessings, thank you, I've pretty much resigned myself to needing an estrogen blocker or chemo or something of that sort.My biopsy path report says I'm 75-100% range of positivity. We'll see where it's at after my MX next Wednesday. When I talked to my DH about it he said if it's a choice between living or dying what choice do we have? That's a very good question 🤔

WenchLori

Also.... Sassy went over my path report with me and she said my results warrant chemo. I trust Sassy more than my BS!

Daczahow

I had a total hysterectomy in November of 2015 after my original diagnosis of BC ER+ and had a regional reoccurrence in April of this year before I even finish my herceptin therapy! I came back in my superclavicular lymph nodes that are just above the collarbone. I have finished radiation on that area and start AC chemo tomorrow. I am now classified as stage 3c trying to keep it from going to stage 4 being very aggressive with the treatment

Artista928

Blessings20- How did you go on the medically supervised liquid diet? I need something like this. I'm more overweight than you were and all my docs tell me is about exercise and diet. Well. My knees are shot so exercise is out and diet is hard left in my own hands. I'd love to have a medically supervised something to get a move on quick to lose. I'm on Tamox instead of AI even though AI is best for me because of my joint issues, largely due to my weight. If I can lose a decent amount of wt my joints may improve so I can do an AI in a few months. My ER is 95% so I'm nervous about being on Tamox at age almost 52. Thanks!

ChiSandy

Not to rain on anyone’s parade, but even with barely-adequate body fat (<20%) our bodies still make estrogen via the action of aromatase (secreted by the liver) converting androstenedione manufactured by the adrenal glands into estradiol. Now, you can survive quite well (especially past childbearing age) with low body-fat (although if you dip too low you risk accelerating osteoporosis). But adrenal glands are necessary for our essential fight-or-flight response (which may be less necessary in the modern era than in cave-dweller days, but still necessary when we’re in danger). Hence the need in ER+ cancers for either shutting down estrogen production via AIs or glomming up the estrogen receptors via SERMs so the tumor cells can’t take in estrogen and would thus wither & die or at least stop proliferating.

(I had been about to request a lipo & tummy tuck to reduce my number of fat cells--w/o surgery you can only shrink them--until i learned that the adrenal glands don’t just pump out cortisol & epinephrine)..

dtad

Hi guys...its actually anti hormone therapy not hormone therapy. Hope that makes it less confusing!

Deaconlady

Hi WenchLori. I had a total hysterectomy in 2008 and was on hormone replacement till diagnosed last September. My initial diagnosis was DCIS fairly strong ER and PR+. During lumpectomy, IDC was found very weakly (5%) ER+ and PR- and HER+. I've started Arimidex after finishing chemo and rads, and get Herceptin every 3 weeks.

WenchLori

Thank you dtad for the clarification. It is greatly appreciated!

Thank you Deaconlady for your input, it is very helpful.

Blessings2011

Artista928 - will send you a PM so I don't hijack WenchLori's thread!!!

WenchLori

Hijack away Blessings! I'm always up for all the info anyone can give any of us here. I think I can speak for a lot us here that we are sponges douse us anytime!

WenchLori

Blessing, I'd like to try the medically supervised liquid diet! Please, please, pretty please

Blessings2011

O.K.! Twist my arm! It's a long story, but remember, you asked for it!

~ ~ ~ ~ ~

When my MO told me that I was producing estrogen in my belly fat, I weighed 204 pounds on my 5'5" frame. I had tried everything to lose weight, and with fibromyalgia, just doing gentle water aerobics in a warm pool was NOT taking any pounds off!

I had seen an ad while at one of my Kaiser appointments for a Medical Weight Management program. I was so desperate, I called and reserved a spot at the next Orientation Session. What I found out was that this is a program only for those who need to lose at least 40 pounds. Some were there needing to lose just 40 pounds, some were morbidly obese. Most had been referred by their doctors, but a referral was not necessary.

The program would consist of four months of Optifast shakes and soups and bars only, and it was required that you have regular lab work and medical exams during the entire period. Once the "Fasting" period ends, there is a "Transition" period, where regular foods are slowly introduced back into the diet. After that, you are considered in "Maintenance."

The other requirement is that you attend a group session once a week (after hours), where you see the nurse (or doctor, if you'd just had labs), weigh in, pick up your weekly products, and sit through a class. The people in my cohort were amazing, and we adored our Facilitator. We often sat around chatting long after the class was over. It was also very motivating to have people cheer you on all the time.

Once I started my program I never looked back. There were, I think, around 18 of us in the initial group, but several dropped out, for one reason or another. I had just had my BMX and Exchange surgery, and had dodged both chemo and rads, and I told myself that THIS was my breast cancer treatment - to lose the weight and get healthy.

I never, ever cheated. I loved the taste of the shakes, and we could add sugar-free Torani syrup to our Vanilla, Chocolate, or Strawberry shakes. (They make around two dozen flavors of sugar-free Torani syrup. I would make a chocolate shake, and add sugar-free peanut butter syrup, and call it my Reese's Peanut Butter Cup shake.) The soups were also good, as were the bars.

They want you do drink a gallon of water a day, which I hate to do, so instead of the suggested 8 oz of water to mix my shake powder with, I used two cups of water and half a cup of ice and put it in my Vitamix. I also added fiber tablets, and it made a GIANT shake, so I was never hungry, and always hydrated.

I took my meals with me wherever I went. I'd just make up my shakes or soups and put them in travel mugs. I'd cut my bars into ten pieces and nibble throughout the day. I even went to lunch with the girls - a lot - ordering just an iced tea, and drinking my protein shake.

You also have to exercise, but in their definition, that just means not being a couch potato. Everyone is given a pedometer, with the expectation of at least 10,000 steps a day. That's a lot, and you'll get information about how certain activities translate into steps... like doing laundry, or yard work. Many of my classmates had physical conditions that prohibited them from doing any strenuous exercise.

I had one glitch in the process... my liver enzymes went up suddenly and they found I had a sludgy gallbladder, but that was at the end of the Fasting phase, and as soon as I started adding food back into my diet, it went away.

The amazing news was that a few weeks into the Fasting phase, I started noticing that my Fibromyalgia pain was lessening, then gone. I realized that Optifast is gluten-free, so when I added food back in, everything remained gluten-free.

ALL my labwork returned to normal: blood sugar, cholesterol, etc. My blood pressure went from 150/80 to 108/65. I really felt healthy for the first time in a long time.

I ended up losing 60 pounds, and went from a size 18-20 to a size 8. I had energy to spare.

The bad news: it is NOT cheap. (I think the entire program is somewhere in the $3,000+ range, but they allow you to pay in installments. Kaiser does not cover it, nor does any other insurance.) That is because you are so closely monitored by a physician during the initial phase. You HAVE to be monitored - it's an 800 calorie diet, and you can get very sick if you are not being watched by a doctor. So you pay for the medical supervision and lab work (during Fasting only) and you pay for six products a day (shakes - powder or ready made - soups, and bars.)

But for me, I considered it my medical treatment, so it was worth it. Plus, it was tax-deductible.

The good news: it is open to the public, not just Kaiser members! You can Google "Kaiser Weight Management Program" to see if there is a facility near you. If not, I think there are other physicians and clinics that may offer the Optifast program.

I went through this program in 2012. I kept the weight off for three years, but after a head injury, and sleeping through much of 2015, I have put a lot back on. I'm now back on product, slowly getting my weight back down again. You are considered a member for life, so all the support is available to you whenever you need it, and you can purchase a month's worth of product (at 3 products a day) for as long as you want. I generally have a shake for breakfast and a shake for lunch, then a small regular dinner. I stay between 1,000 and 1,200 calories a day.

Going through the program completely changed my relationship with food. I no longer have insane cravings or mindless eating. I weigh, measure, and portion out my food before I eat it. Going to an all-you-can-eat buffet is no longer a treat for me... it just wouldn't be worth it, and wouldn't be the least bit appetizing, either.

I still have a social life, going to lunch with the girls, or out to dinner with family and friends. Sometimes I just take my shake, and order an iced tea. It's about the people you're with, not the food you consume.

Anyway, that's my story, and if you decide this is something that might work for you, please do attend a free Orientation session and decide for yourself. A friend from church just started not long ago, and she has lost almost 40 pounds already.

And feel free to PM me any time if you have questions!

Wishing you the best!

WenchLori

Thank you Blessings! I'm going to check it out, hopefully there's a location nearby.

ChiSandy

Actually, as a low-carb eater, I like all-you-can-eat brunches because I can zero in on only the foods I am allowed to eat, and only in the proper portion sizes. Am I “getting my money’s worth?” Heck, no. But mindful eating, especially at a restaurant, is not about saving money but rather eating what you are supposed to eat while being able to enjoy it. Shrimp, oysters, crab legs, smoked salmon, salad greens, vegetables, (sometimes a teeny bit of prime rib if there’s a carving station), and fruit and cheese for dessert--not too much, but no deprivation. No sauces I can’t have, no requests that make waitstaffs’ eyes roll or exasperate the chef, nor having to peel breading or batter off fried foods. No sugars either--and no fat that I can’t see and decide whether or not to eat. No salt if I don’t want to add it. Yes, it’s on the plain side (my late mom asked me once why bother going out if it’s stuff you can make at home), but I feel like a normal person, not a rehab patient on furlough. I was on Jenny Craig once and felt awkward asking to have my frozen meals nuked while everyone else ate off the menu. And on the old Weight Watchers, the math of weighing, measuring and guesstimating was exhausting and interfered with enjoying what I was allowed to eat.

Worrying between mammo & dx (and an ill-advised trip to NOLA, with undisciplined eating) made my weight begin to creep up. Diagnosis & surgery threw me a pity-party.....more weight still, especially when traveling at the end of treatment. Letrozole + the stragglers at the pity-party put another 10 lbs. on me within only a couple of months. Going back to low-carb has me back to my pre-letrozole weight. Next goal is my pre-dx weight, and eventually getting down from obese to overweight. It’s the only eating plan that not only works for me at home but also in the real world & on the road without feeling like a freak. (Going starch-free is automatically gluten-free as well....and what could be more fashionable)?

And I feel vindicated--last month’s Cancer Wellness Seminar leader advocated a Mediterranean diet, but with 1 T. of fat (aggregate, from all sources) a day, 6-8 servings of whole grain a day, 2 servings of nonfat dairy (hello, lactose--even lactose-free milk has sugars) and all the fruit I wanted. Yeah right--for me, a recipe for pre-diabetes. But yesterday in the NY Times, a study reported that for women who’ve survived Luminal A breast cancer, losing weight--especially avoiding starch & sugar!--helps delay or even prevents recurrences. The same insulin-release mechanism that leads to fat storage rather than burning also promotes inflammation and ER+ tumor cell growth. Even if my BMI never dips into the “harmless” (at 65, after a lifetime of yo-yo-ing, the boat has sailed on “healthy”) range, the knowledge that by keeping insulin and inflammation at bay I’m also delaying or avoiding a recurrence is good enough for me.

solfeo

I tried every diet known to man before the cancer, including the medically supervised liquid diet. The only one on which I have succeeded and don't think I will have any trouble maintaining weight loss, is the very low carb ketogenic diet I am currently following. Because I never feel deprived - I completely lost my food cravings on this diet. I have lost 120+lbs and I'm only a few months away from goal. Currently shooting for BMI of 23, but I may go slightly lower if I still seem to have too much body fat at that point. That was my healthy weight back in the day but I had boobs then (very large ones) LOL

WenchLori

Yay! Great info on diets Blessings, Sandy and Solfeo!

My DH and I tried the Mediterranean diet and we gained weight! It had to go! Now we follow the Cut The Crap Diet. Yeap, that's what it's called. No starches, no processed foods etc. we eat meat, nuts, fruits, vegs and a little good for you fats. I don't exercise the way I used to or I'd have lost more weight. My PCP says he's happy that I haven't gained any weight in the past 4 years. I have a feeling all hell is about to break out in the following months! Yikes!!

Blessings2011

ChiSandy - so glad you have found something that works for you! Unfortunately, we also have a boatload of other medical conditions that seriously curtail the types and amounts of food we eat. (Even after my big weight loss, I looked gaunt, and the nurse suggested that I gain a few pounds and forget the BMI numbers.)

solfeo - Congratulations on your weight loss! I know that must have taken lots of discipline..... wonderful achievement, and I'm sure your body is thanking you...

~ ~ ~ ~ ~

As for the all-you-can-eat buffets, I think it's primarily the gluttony that bothers me first. People passing by with heaping huge platters of food that they inhale in one sitting (then go back for more), where at our house, it would last us all week.

Secondly, I didn't mention it above, but not only do we eat gluten-free, but also a Diabetic diet (low carbs/no processed sugars...DH now is insulin-dependent thanks to Prednisone, and shoots up three times a day) as well as a Nephrotic diet for chronic kidney disease patients. He's the one with kidney disease (incurable) but it's just easier (and healthier) if we eat the same things. The difference is I can splurge on a few more carbs if I want, as I am not so limited. After five years without it, red meat has completely lost its appeal to me. His kidneys can't process it, so we just don't eat it.

The other thing is, we generally don't eat what we haven't seen prepared. DH would frequently take his 94 year old dad to Kentucky Fried Chicken, where Dad would get the works, and DH would get a plain grilled chicken breast. Then we found out that it is marinated in chemicals and MSG, and grilled with wheat flour. Who knew? The sodium content alone is more than his daily allowance. Salt will shut his kidneys down. And don't get me started on the Senior's Church Potlucks! Nothing there but casseroles made with canned Cream of Chicken Soup (a million grams of salt, plus chemicals and preservatives) and a jar of mayonnaise. Oh, and desserts.... TONS of desserts....

And it's hard to change other people's perceptions when it comes to food.

"Oh, one bite isn't going to hurt you..." (Uh, yes, it can. With DH it can eventually put him into kidney failure. For those with celiac disease, one bite can put them in the hospital. Those with food allergies? Enough said.)

"But I made this just for you!" (Seriously? Are you trying to kill me? You've known for years I can't have that!)

"Gosh, you've got to eat something!" (Uh, no, I don't. I'm not hungry. I'm just here to be with all of you. Really.)

Eating the way we do has become a way of life for us. No, I'm not the Food Nazi. Whatever you choose to eat, it's your body. Enjoy whatever makes you feel good!

Me, I'll stick to what I know my body can handle, and I may be a bit fierce when it comes to DH. He is just this side of dialysis and transplant. But I'm not Debbie Downer when we go out to restaurants. I oooh and ahhhh over everyone else's entree, and smile and drink my iced tea, or eat my salad with the homemade dressing I've brought along. After all, I'm really there for the company.

besa

I just posted the link below (along with other links to the same study) in the clinical trials section of the boards. To me the study seems interesting - possible help with weight loss and, at the same time, helping to answer some important questions when it comes to weight loss and bc recurrence. "The Breast Cancer Weight Loss (BWEL) study,"

http://www.dana-farber.org/Newsroom/News-Releases/...

"....Participants in the BWEL study will be randomized to a two-year weight loss intervention, plus either a health education program designed to provide information about breast cancer topics, or to a health education program-alone control group. Patients in the weight loss group will work with a health coach over the phone to help them increase their exercise and reduce calories. Fitbit Charge HR and the Aria Wi-Fi scale are being provided to help patients track progress throughout the study and help them to stay motivated to meet their goals. Coaches will receive the participant's data with their explicit consent to see how they are doing, give encouragement and a little nudge when needed to help participants stay on track...."

solfeo

Hi besa - I have a lot of self-imposed restrictions that are not part of a normal ketogenic diet. I don't eat dairy for instance but I don't freak out about it if I get some every once in awhile in a restaurant. I don't eat in restaurants very often though because I don't know what is in it if I didn't make it myself, even salads. I'm also gluten-free, even trying to avoid trace amounts, and there's gluten in just about everything. Soy sauce has gluten and it is frequently used in salad dressings and marinades. But again, I don't worry too much about occasional transgressions. I try not to cheat on starchy carbs or sugar, however, because that kicks me out of ketosis and it is never worth the time and effort it takes to get back in. It also reawakens my food cravings and turns the whole process back into a struggle, however temporarily.

Ketogenic diets are still controversial in general and for cancer, but my top priority was losing the weight and this is the only way I have been able to do it. How can my doctors complain when the results have been so good? They all tell me almost none of their cancer patients lose the weight they need to lose, even in small amounts, let alone over a hundred pounds. My bloodwork is great and just keeps getting better the more I lose.

So my results have pretty much shut down all of the criticism, but I do get a lot of "just this once" from people. "How can you not have cake on your birthday?!" etc. Uh, I just don't want it, but go right ahead. I agree, it's a way of life and I believe thinking about it that way instead of as a "diet" is one thing that has contributed to my success.

ChiSandy

Changing what you want is the toughest thing of all, especially when fine dining and travel are among the few pleasures in which both of us can indulge together, considering how long and hard my husband works. I can't imagine shunning restaurants unless I can no longer afford to dine out. I care about my health, but I also care about how things taste. Fortunately, that helps me avoid junk food because it just doesn't float my boat.

What has me on the warpath is why so many processed pre-prepared foods (especially in cheap restaurants) have to have starches and sugars when the original recipes don't call for them. Why on earth can't they throw that simply-seasoned plain chicken breast on a grill or oiled flattop without flouring or breading it? My mom & grandmother would never have put high-fructose corn syrup and modified food starch in their sauces and soups, but the ones in cans are loaded with them--and much more salt than you'd use to cook or season at the table. At better restaurants (and ones where you are a regular), chefs are more willing to accommodate dietary health concerns (and don't have to resort to prepared crap because they not only cook from scratch but also use the best and purest ingredients).

Oh, I know all about taste-testers and market research and all that b.s. (I’ve read many books about “food chemists” tasked with tweaking flavor profiles to consumers’ tastes and engineering frankenfoods out of surplus corn, soybeans and chemicals). It’s a damn shame that so few people these days know what real food tastes like.

WenchLori

This is all great reading! Thank you everyone!

Solfeo~ Congratulations on your mega weight loss! I'll need to check out the ketogenic diet that you use and the Kaise Medical Managment Program.

Besa~ thank you for the research link, it sounds like something I need. I'll have to check into it a little more. I need to get my Fitbit out and start using it again, it kept me honest.

Blessings~ it sounds like you and your DH have your hands full! I admire your stick to it adittude! Only you know what's best for you and your DH.

Sandy~ I so LOVE real food!! I don't care for heavey or creamy sauces, they hide the real food.

With my surgery coming up next Wednesday I'm worried what type of foods all of my church family will be dropping off for us. I let everyone know we eat a lot of fresh vegetables and fruit. You can't go wrong with that. Or can you? We'll see!

My hubby and I love to do buffets andjust like Sandy, we never get our money's worth. We usually end up there on those nights when neither of us knows what we want for dinner. I'm one of those people that piles my plate as high as I can get it BUT it's all salad and fruits. My hubby used to get upset when I'd eat so much salad that I didn't have room for my entray. I'd tell him that's exactly why I do it. Fill up on the good stuff take the rest home for tomorrow.

My DD's BFF from school and now adult life gave me a book when we first found out about my BC. (DD's BFF is now a nurse studying to become a heart surgeon.) The book is Fight Now by Aaron Tabor MD. A lot of the foods and supplements listed are things that I already eat, just not in such high amounts. I love apples but I know I couldn't eat 2 a day. He also gives the supplements and amount needed daily to get the most benifits. After compiling a list of all the supplements needed daily I'd lose A LOT of weight! I'd be so full from supplements that I would never be hungry again.

Please keep all of your experiences coming. I think there is a wealth of information from all of you