Estrogen Blockers ... To Take Or Not To Take

JanetinVirginia

michaeld - you can go to adjuvantonline or cancermath.net and put in the details of your wife's pathology, age, etc.  It will return risks with or without hormonal therapy.  My onc uses adjuvantonline - altho it says you should be a medical professional, you can register as long as you agree to disclaimers etc. Hope that helps.

I tried to find the same answers about testing for estrogen levels if the point is to reduce estrogen  - to what level, etc, it seems like it should be measured.  It's a good question to ask the onc.  And if you get an answer, let us know!! 

Whether or not she takes an AI, get a copy of the Anticancer diet book (just google it) - lots of things you can do to reduce risk - exercise, diet and get any excess weight off as estrogen is stored in fat.  Best to you & your wife.

lago

michaeld her onc should be giving her those stats. For me, if I just did hormone therapy it would improve my alive & NED in 10 years by 26%. Granted now it's a bit less because I did chemo too. Combined therapy for me is 44% improvement.

Also remember you will always find more complaints online. People usually don't post "I'm on Arimidex and feeling great" unless asked. My feeling on the SE is I won't know until I try. If the SE are that horrible then my onc & I will have to find another drug or manage the SE. She is already going to put me on something for osteoperosis because I have osteopenia already and my mom has osteoporosis.

anniemac

Wow-what a great dialog (oops, no spell checker here!).  I am going to see my onco  for the regular check up Tuesday so I will ask about the questions that were brought up.  I forgot-yes, really-to take my pill for the last two days and my thumbs feel so normal.  I also need to ask about my vitamin D levels-that may also be the cause of my osteopena.

rgiuff

Michael,  there have been no formal studies done comparing AIs to natural alternatives, because drug companies, who pay for most of these studies, would not benefit from doing them if the natural interventions turned out to be just as good.  There is a whole forum called Alternative, Complementary, and Holistic treatment on here and lots of topics under that.  My favorite is the Natural Girls thread.  Many of the women on there are using supplements, such as DIM or 13C, which are supposed to balance the good and bad estrogens, as well as dietary changes, like cutting out dairy and meats that have the growth hormones added, and eating lots of fruits and veggies.  Exercise and cutting down on alcohol are also supposed to help lower estrogen levels.  From what I see on these boards, most Oncs will not check estrogen levels.

LtotheK

Rguiff--any reason why oncs won't test estrogen levels?  That only seems logical!

rgiuff

I really don't know why, but from reading on all these boards, I'm seeing that most Oncs have been saying there's no need to do it.  I haven't asked mine yet, but would really like to know just out of curiousity just how much I'm still making.  Haven't had a period in about 10 months now and some days I feel low estrogen symptoms, like dryness down below and joint achiness, and other days feel like I've got plenty.

mollyann

Iago,

Please give some documented evidence that your hormone regimen will improve your survival by 24%.That must be a misleading relative risk number.

You need to get the absolute risk number. For example, Tamoxifen is said to improve survival (relative risk) by 50% in node negs. When the absolute risk figure is actually 3.5%

I'm sure you will do fine! You have a positive attitude.

lago

Mollyann:

I don't have access to the tools my onc used. She just gave me a print out with bar graphs and it stated that 26 additional women (out of 100) were alive and NED in 10 years when choosing hormone therapy only after surgery. Granted if you choose both chemo and hormone therapy that number does go down because chemo had an effect too.

And remember that statistic is for my case specifically.

LtotheK

Thanks for bringing that up, Mollyann--I am really confused myself now because I think my improvement with Tamox is a measly 3 - 4%.  But I just had someone tell me that if my Oncotype was 8%, it would be double that if I don't take Tamox.  That just doesn't sound right...

I wish a positive attitude were where it's at. As I told a friend, if positive attitude cured cancer, I'd have never gotten it in the first place.

revkat

Sounds like Lago's doctor gave her the Adjuvant! Online printouts. At the same stage, with a bit smaller tumor, hormonals give me an absolute risk reduction of recurrence/death from cancer over the next 10 years of 18%. That's an absolute number, not a relative reduction number. For those of us with stage 2 or 3 ER+ cancer the hormonal medications can make a big difference. That's why our doctors push them.

MHP, the Oncotype recurrence score assumes that you will take tamoxifen for 5 years. Since on average tamoxifen's relative risk reduction outcome is 40 to 50%, a quick way to figure your risk without it is to double your oncotype score.  

DebbieLynn

Good Day everyone, I will be having my ovaries removed , Asap ! No Tamoxifen for me ! No more Soybeans and or other estrogen producing foods either. Good luck to all. 

@ Michael , hope you find your answers.

lago

I had my surgery August 31st. Started chemo in October and won't be finished till Jan. 18th.  I will be getting Arimidex  after that.

mollyann

My oncologist, like many others, claims all the computer programs like Adjuvant online and others contradict each other and are just the interpretations of a few docs who patented them.

She says," Trust but verify. Read the actual studies." She is blunt and known for attracting a level of patient who expect her to provide evidence. Other patients are more comfortable with, "whatever you day, doc."

We all get by the way we can. 

revkat

Right Mollyann. "like many other" huh, have the data to back up the % of practicing oncologist who believe Adjuvant online is "just the interpretation of a few docs"?

The studies it is based on are available.

Patients who look to evidence based medicine don't say "whatever you day, doc". But they also don't look to a few anti-treatment posters on a public discussion board either.

Just getting by. 

 

Bren-2007

My doc also gave me a printout from Adjuvant.  I researched Adjuvant myself and read all the studies on their breast cancer site.  I opted out of an AI because of SE's.  For my particular cancer and Stage, the 50% benefit to me was actually about 5% tops over a five year timeframe. 

mollyann

Good for you Revkat! You find the data.

Maybe you can explain how all the software programs come up with different figures for us from the same studies.

Can't wait to hear the explanation 

Happy holidays!

lago

It's not that I don't question my onc. She is totally open to questions.  I don't feel she had been "selling" me treatment. When I first met her she said "tell me your story". Then she said "what are your concerns" The therapy she presented was exactly what I thought I should get based on what I read before I got there.

When she mentioned another treatment for me based on some test results she actually gave me a print out of the most recent study. She is not hiding anything from me.

I also feel confident knowing that she goes to the conferences all the time… Just got back from San Antonio yesterday. There has to be a certain amount of trust because they are the ones with both the experience and the medical degree, specializing in oncology.

You have to understand that I may have a high percentage because of my specific diagnosis.I would think someone who is a stage I will not have as high a percentage. If you choose not to do this therapy that's fine but making those of us who chose to listen to onc feel like we are clueless is rude.

mollyann you always answer with "find the data" but never post any of your own to counter it. Please, in the future stop asking me to post data. Don't assume my onc used Adjuvant online.

Bren-2007

Lago .. you're 100% on the money .. my decisions about treatment are based on my diagnosis, and I certainly would never recommend anyone follow my treatment decisions.  Those decisions need to be based on your own diagnosis, which is individual and unique to each of us.

Bren

rkolycius

Hi, I've been on Tamoxifen for about a year now after 3 lumpectomies and rads. No side effects at all but my oncologist just told me that if I'm not having side effects it's probably "not working"!!!! She told me I need to get off my Wellbutrin and take something else because it's interfering with the mechanism of action. So if that helps you at all.......I'm happy!

Bren-2007

Rko .. I notice you're from Soldotna ... did you know John and Deb Clonan?

rkolycius

No I don't but I'm sure I could find them easily? Do you recommend it/

VBK1944

Hi, just wanted to let everyone know that I, too, have no/min SE on arimidex. I have taken it for 18 mos now. I have arthritis so the joint stiffness could be due to that rather than SE. I am dealing with neuropathy insted after chemo and some memory problems.

VBK1944

Hi, I, too, have severe itchy and dry skin on Arimidex, and dry eyes and leg cramps. My feet goes numb when I try to wear tight-fitting shoes/boots (neuropathy). But other than that and joint stiffness I have no SE..I hope this will encourage others to give the estrogen blockers a try..statistics/studies show that these drugs do increase our survival and lower the risk of recurrance..

Bren-2007

Rko .. I was just curious cause Deb was a long time member on this site.  She passed away almost two years ago.  She was a great friend and I still miss her.  She had two daughters.  They still live in Soldotna.

Thanks for responding,

Bren

shells43

I just started anastrazole and if what you say is true, I'm looking forward to great skin! Great for me means not oily. I hope this is true!!

LtotheK

I don't know where doctors get the idea that no SEs = not working, but I really don't see how that is substantiated (and it's refuted here on the boards).  Where's the evidence on that? Until that's a study, I think it's unfair to make patients feel guilty about not having SEs on Tamox/AIs.  Those that do often have to go off of them, because the SEs are intolerable. Like my friend who just got off because she basically couldn't walk.

Regarding the studies, either way, I love more info. My general experience with a few awesome exceptions was whenever I posted in the natural or alternative arenas on this site, I was told I was going in the wrong direction, yet when I asked precisely where I should be looking elsewhere, the trail always went cold.  I could never find the information so many alluded to, yet never posted.

painterly

A study came out of the U.K. stating that if we don't experience se's that the drug is not working, but this study or claim was later refuted.

lago

I have read that if there are SE it is working… but that doesn't mean if you don't  have SE it isn't working. Some people are lucky and don't have as many SE. Right now I'm going through chemo-pause. I haven't had my period since I started chemo. I get a few sweats at night but never drenched. Just kick of the covers for a few minutes. Never any flashed during the day. I'm just lucky. Other women are suffering with many intense SE from chemo-pause.

LtotheK

Hi, In_cognito!  Well, that's a mixed bag for us younger ladies...but it is nice to not feel so guilted by it all.  I must say, I just need ONE thing to go easily in this long and arduous road; not having to obsess about whether I should be having SEs to make this drug work is a relief. I feel fairly confident that the hot flash stuff applies to younger women,too.

Day 6 or 7 of Tamox and hanging in there a-okay.

msbehavin

I have decided against tamoxifen. I decided instead to look at what appears to have caused the cancer in the first place, and that is unbalanced hormones. I have the luxury of having caught the cancer very early, so keep that in mind as you read this:

I had a complete hysterectomy 10 years ago and today I am 56 years old. I had a saliva hormone test done about three weeks after my cancer surgery and this is how the results looked:

Estradiol was in range at 0.9 pg/ml (0.5-1.7 with 1.3-1.7 being optimal)

Progesterone was 33, also in range (12-100)

RATIO of progesterone to estrogen was 37L which is very LOW. The optimal range here is 100-500

Testosterone was in range at 40 (16-55)

DHEA was in range at 7.7 (2-23)

Cortisol was VERY high at 15.1 (3.7-9.5)  Since cortisol and progesterone compete for common receptors in the cells, cortisol impairs progesterone activity, setting the stage for estrogen dominance.

My tumor was ER and PR positive. THIS IS GOOD news according to my oncologist. "There is still some progesterone trying to fight the good fight".  

After much study, on literally hundreds of other sites, this is what I learned about most breast cancer. First, in a normal 35 year old woman, estrogen builds cells,, good ones and bad ones,  and keeps on building them until progesterone breaks them down and they are eliminated. IF you don't have enough of a ratio of estrogen to progesterone, your body can't keep up with the cycle, so the good cells AND the bad cells multiply and can cause cancer. The fact that my cortisol levels were so high (and I suspect have been high for at least 10 years) tells me that my body started building this tumor a few years ago and my body has been struggling to make and keep enough progesterone . At one time or another I have experienced the following symptoms and have reported them to my doctor. He never once mentioned it might have something to do with progesterone levels. This information is available everywhere, on any health website the government sponsors, the colleges and universities support, literally anywhere.

"Women who are experiencing low progesterone levels as they approach menopause may have some of the following symptoms: premenstrual migraines, pms-like symptoms, irregular or heavy periods and anxiety and nervousness. Some women may also experience, hot flashes, cloudy thinking, poor sleep, vaginal dryness and loss of sexual desire. Additional signs of low progesterone levels may include wrinkled skin breast problems, difficulty in losing weight and fluid retention.
Estrogen dominance plays a large role in low progesterone levels. When estrogen levels are not sufficiently balanced by progesterone, women may experience weight gain, painful headaches, bad moods, chronic tiredness and loss of interest in sex. These are all classic symptoms of low progesterone levels, and are clinically known as premenstrual syndrome and may well affect women exponentially during the time before menopause.
Estrogen dominance may also be a contributing factor to the development of breast cancer, because of estrogen's proliferative effects. Estrogen dominance and low progesterone levels can stimulate fibrocystic breast disease. This condition can be treated by raising the progesterone level with a natural progesterone supplement. "

So I had to ask myself why didn't I know this and do something about it? As a post menopausal woman who works full time and doesn't have time to watch daytime TV shows where this information has apparently been discussed time and again, I believe I should have gotten this information from my doctor. So why didn't he mention it? I believe that treating all of the symptoms over the last ten years has kept the pharmaceutical companies and the doctor in business. Progesterone cream at 15-20 dollars a tube would not have given them a single dollar. I can't imagine any other reason that I wasn't told. HELP me understand why it was never discussed? Why wasn't a hormone test EVER done? Neither serum or saliva? Why was I allowed to suffer thru all of those symptoms with virtually no relief in site only to end up as a breast cancer patient, scared out of my wits? I do know that I am taking back my health and using the doctors as just another tool at my disposal for testing. I was angry and now I am back in charge of me.

Women don't have to suffer thru all of this cancer. Shame on the mainstream medical establishment for its selfishness and protectiveness. I look at these boards and all the women who have their breasts removed and take the chemo only to get the cancer back again and again and they are scared for their lives every day.. and if they were only given the alternative of proper healing in stages, I am wondering how many women would still be alive, having a much better quality of life? We won't know though, as no research will ever be done to support this method: I am not an MD, so each breast cancer survivor needs to do their research, but this is how I am personally progressing:

• 1. OK, I have breast cancer, Surgically remove the cancer cells
• 2. Have a saliva hormone test
• 3. Based on the tests, Lets balance out those hormones for three months using BIOIDENTICAL hormone therapy,, progesterone cream at minimum.
• 4. Three months ultrasound
• a. Cancer gone? Great. Have hormone levels checked again.
• b. Cancer is back or still there?
• i. Is it still gone or smaller (if no surgery was done)?
• 1. Keep going with BHRT
• ii. Is it growing? Let's surgically remove the cancer if not done prior.
• 5. Test the hormones again,,,
• 6. Reformulate BHRT based on new results,
• 7. 6 month ultrasound
• a. Cancer gone? Great,
• b. Still there or back after three months? OK,
• i. Radiation therapy or radiotherapy
• 8. 9 months mammogram
• a. Cancer gone? Great
• b. Still there? Have another hormone test, if hormones won't balance,
• i. Start Tamoxifen therapy OR
• ii. Start Chemotherapy
• 9. 12 month mammogram
• a. Cancer gone? Great
• b. Still there? More Chemotherapy