Does anyone say no to Tamoxifen

it was great to read about somebody having no really bad side effects to tamoxifen.  I am trying to remain positive.  Had radiation treatment, then was given aromidex(I'm sure I spelt this wrong) and I literally couldn"t get out of bed because of muscle and joint aches.  So was put on tamoxifen.  It was a breeze frist couple of months, then I had terrible side effects, hair loss, memory issues, and muscle and joint aches.  I went off of tamoxifen and started to feel great again.  Went to the doctor and am now back on tamoxfen.  The risk of getting breast cancer or any other cancer is too real.  I am trying to deal with side effects day to day.  Am hoping they will level out.

I am 58, had a hysterectomy at 38, and started taking estrogen patch at 47.  I had been on estrogen therapy for 10 years.  I was diagnoised with bc at 57.  I immediately went off the patch.  I never liked taking estrogen but I had ostiopena and was plagued with hot flashes day and night.I was on the lowest dosage that worked.  I now realize what a miracle drug estrogen is.  No brain fog or memory issues, no joint pains, great libido, great skin, and no hair loss and better bones.

I don"t know if all my side effects are from no estrogen or tamoxifen or both.  I keep thinking things will level out.   hope I'm not just fooling myself. 

Am having a hard time just getting through my work day.  I come home and go to bed.  I can't work out much anymore (I use to work out every day all my life) I'm on a mild anti depresent,        (lexapro) it has helped me to not care as much about my issues.  I do feel like a robot with no brain.  My memory issues are terrible, am having trouble with recipes, can't spell anymore or read, cant focus.  But the lexapro does help me not to care about everything as much.

Every day I am happy with all the small good things.

anybody able to relate to me?

lindae

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Tamoxifen is not general anesthesia, surely you can see the difference there.  The problems with Tylenol and liver function have been well known for many years--that is also my point, EVERYTHING has SE.  I guess my point is that we are in a situation that is less then ideal, and I don't think there are any ideal answers or one is more right than another, but as far as trying to avoid menopausal SE, just that, it is all I'm addressing, did any of us think we were going to get past menopause without symptoms--if we didn't have bc?  My friends who are going through it naturally, without hormones,  are losing more hair than usual, they are becoming more forgetful--which I am and forgot to mention, their vision is changing, they are fitting pot-bellies, they are more tired than they were before, some are intolerably emotional--others not, their symptoms are pretty much the same as ours--we just aren't doing it in our bodies time frame it is being accelerated, or thrust upon us due to bc, which sucks.  I have some friends going through menopause who are suffering much more than I have, and more than what I've read other women on the boards are going through, and I have other friends who just breezed through it, with nothing more than missed periods. All of our bodies and personalities are different.  I just think blaming it all on Tamoxifen isn't fair.  I was terrified to take it because of what I saw women writing on these boards, it took me weeks to begin, I cried when I took the first pill, because I thought all these horrible things were going to happen, and so far they haven't--and I'm very grateful, and the ones that I have had are way better than cancer. Maybe having my mother die in my arms from bc makes me more willing to deal with the possible SE, and the ones I have, I try to deal with by having a positive attitude, and since I didn't do chemo, I feel I'm making the best choice for myself.  Everyone is scared to put something in their body, we can either choose to feed the fears of newly diagnosed women, or we can openly say what is happening to our bodies, and show them that life can and will go on, it may be different, and that sucks, but many many women do fine on Tamoxifen, and many don't, and some do fine off it, I'm just not willing to take that risk.  I don't like being on it, I don't take anything, up until bc, I didn't even use Novocaine in the dentists office when getting a cavity filled, had a 50 hour labor without meds, and stitches without being numbed. When given the pain pump in the hospital after the exchange/hyster/ooph, I only pushed it 20 times in 48 hours, they kept checking on me because I could have used it every 10 minutes for 48 hours, but I didn't want it in my body. I don't easily pop things into my body, it scares me, but cancer scares me more. 

Karen 

Dawnn, Your surgeon is right, you should avoid Tamoxifen, just like the pill, or hrt before surgery.  I was already on it and went off it two weeks before surgery and stayed off it for two weeks after.

I had two tumors also, that is why mine seems so large the pathologist measured them as one, if he hadn't I would have been stage 1.

You are right that our bodies need estrogen, even the small amounts generated after menopause that come from the adrenal glands and in our fat cells.  Although I've mentioned this before and got my head bitten off, how skinny or fat you are doesn't really impact the amount of estrogen generated from fat in your body, it is the amount of Aromatase that your body generates that impacts the amount of estrogen Aromatase produces--thats why AI, break that cascade, and really, really reduce the estrogen that is available in the body.  A skinny woman with high levels of Aromatase will have more estrogen in her body than a heavy woman with less Aromatase in her body.  Being over weight after dx isn't good, but estrogen isn't necessarily the reason. I was less comfortable being on an AI, I won't go into detail, but I have a background in biology, and breaking that cascade made me more uncomfortable than having a hyster/ooph and staying on Tamoxifen.  Tamoxifen has a positive estrogenic effect on bones and the heart, while blocking it, hopefully most of the time on cancer cells. I've bought myself 5 more years before I have to think about being on an AI, with hope there will be something better before/by then.

Regarding you scan, I would request it be read by another radiologist at ANOTHER hospital.  I just went through this will a lung CT, the second radiologist and the lung doctor didn't see what the first radiologist saw, but I'm still getting rescanned in 3 months, ugh.  It is never easy to trust our doctors completely, they are people too, I always hope mine are in a good mood and life is going well for them so they aren't too distracted!

Karen 

KEW~How do I get the scans? Although I am being seen at UAB, which is one of the top centers, my oncologist's lack of concern over my scan or my unhappiness with the plastic surgeon she referred me to, had me make an appointment with another oncologist.

I have copies of my path reports, BUT, my MRI, mammos, my OncoDx, chest xray, Dexa & bone scans are at UAB. Can the new oncologist send for them if I like him more?

The radiologist said "not consistent with metastic disease, but mets can not be ruled out" follow up suggested. It is along the Mx side of my breastbone and does look like a long scrape.

I agree with the estrogen levels having NOTHING to do with size because I am hormonal CRAZY!!

My "real" boob that is left is crazy sore & I have been bleeding since I had a D&C August 20th! They needed a biopsy of my uterus before starting me on Tamoxifen because I already had a heavy cycle....biopsy was fine,.....BUT come on....what bleeds for a month, has one boob, can't sleep, can't stay awake, crys, laughs, screams and drinks too much coffee while taking Ambien?

ME.

Koryn-Dr. Lee's book is indeed a great source, full of years of his research. You are so right that taking tamox does not insure you will never get bc. In fact the stats they give you are so skewed, I cannot give them any credence at all. As others have said, we all need to know our hormone levels. We need to find the right doctor to do these tests and interpret them. This is not a one size fits all disease. It just infuriated me that my onc put me into some flow chart and determined my treatments, before she even knew me! I live in a county with a very high rate of bc. I thought for sure someone would ask me all kinds of questions to determine the causes. But no one asked me anything. The business of cancer is about making lots of money. It is no coincidence that arimidex came out as the new drug de jour just as the patent on tamox ran out. There are problems with all these drugs. The better way to treat us is to determine what is wrong with our chemistry and try to change it, not destroy our hormonal system. All I can say is I that I am finding that balance and I feel great. I know that my cancer was caused by a combo of things, and I am trying to get all of it our of my life. All these things give me better odds than taking a pill that makes me miserable.

Do not just listen to what your doctor says, or to what any of us say here. Do your own homework. Read everything you can about preventing cancer and then make the necessary changes. That is what I did and that is why I no longer fear cancer. I know some of you do not believe me that I no longer fear cancer, but I do not! I know that I have made healthier choices than I ever did before. I believe the iodine I take is helping to keep my breasts healthy. I believe the supplements I take and a better diet are antioxidant. I believe that exercise, especially taking long walks helps sustain me emotionally and physically. The path I took is not simple or easy. It takes a lot of diligence and time. But time is what we make of it. And I feel great!

Ivorymom:  Are you having a gyno onc do your ooph?  I am having mine done Oct. 6th by my gynecologist.  Do not have a gyno onc at my cancer center or near by.

Need advice.  Currently awaiting the test results to see if I would be a good metabolizer of Tamox.  But in the meantime, I am trying to decide whether to take it even if I am a good metabolizer.  First let me say that I got every SE just trying to get on a high blood pressure med.  I was 54 at diagnosis. Oncotype score 0 meaning 3% chance of distant recurrence.  1.7 cm, Stage 1 Grade 2 0/5 nodes DBL Mast with TEs (that's going slowly because I have already had 2 re-excisions because of complications), then had complete Hysty/ooph, was already post menopausal by 10 years.  I have changed everything that I eat and drink and am taking supplements.  Trying to take as many natural aromatase inhibitors like chammomile tea etc.  Also, eating walnuts every day and taking curcumin etc.  Does anyone know how much of an advantage Tamoxifen would give me?  AIs are normally given to post menopausal but my onc who was against me even having the oncotype test until I begged...she wanted me on chemo...onc said since test was based on Tamox that is what I should take and anyway she had trouble keeping her patients on AIs because of all of the side effects.  So, aside from needing a new onc which I haven't found yet...Do ANY OF YOU KNOW WHAT % BENEFIT I WOULD GET FROM TAMOX OR AN AI?  I've done all kinds of research and I'm still not sure what my benefit would be if Oncotype says I have 0% chance of local recurrence and 3% chance of Distant assuming 5 yrs of Tamox.  Does that mean that if I don't take it that I have a 6 to 10% chance of Distant and if so are the SEs worth it?  Thank you for anyone willing to tell me what you would do.

Luna- These drugs are supposed to cut your risk of recurrance by 50%. So if your stats show a risk recurrance rate of 3%, then tamox would supposedly bring it down to 1.5 %. Is it worth the side effects? I had similar stats. The doctors and nurses were driving me crazy, pressuring me to take a drug. I just could not understand why I should take a drug, when in acutallity it would improve my stats by less than 5% and subject me to all kinds of side effects. If I had a higher risk, maybe it would make more sense. I just want to scream sometimes that we are all being pushed in this direction with so little benefits and at such a high risk of other problems. There are better ways. We can take I3C/Dim or Myomin, and/or eat more cuciferous veggies which is proven to lower our risks the same as the drugs do. We can boost our immune systems with supplements such as iodine, selenium, vit c, vit d and tumeric, etc. We can get rid of the estrogen producing body fat in our midriff by eating a healthier diet. We can lower the estrogens from foods by not eating diary and meat that is hormone ridden and cutting our sugars, glutens, and alcohol. We can make a committment to exercising daily and do all we can to destress. We can learn how to heal ourselves emotionally, which I think is the most important thing. We can do all these things and more, and be better off than if we took any miracle pill. Yes, it is not easy to make all these lifestlyle changes, but they give us the best odds. The reason they are not "prescibed" is because they are not tangible. One cannot measure their worth, so doctors cannot tout them. They can only go by statistical analysis. How do we measure if we "feel" better? All I know, is we need to get truly healthy in order to stay healthy. No pill can help us do that. We can only do that ourselves by making the right choices. Of course, the choice is always up to each of us.

Dawnn, I am 54, went through menopause around 10 yrs ago.  Not exactly sure as I have very little SEs, just some mild flushing of the face especially if I had an adult beverage.  Just had the total Hysty and Ooph this summer...even though I had had a D&C for polyps a year or so ago...docs didn't want me to have Hysty but suddenly said okay as soon as the BC showed up.  So, the Hysty/ooph was at my urging for peace of mind...hope it wasn't a stupid thing to do!!!

Vivre,  The reason I am asking about my risk is that the Oncotype test assumes 5 yrs of Tamox.  On the Oncotype report it says 0% of local recurrence (but then I did have a DBL Mast) and then it says "assuming 5 yrs of Tamox" that my risk of distant recurrence is 3% and then in parenthesis it shows "an average of 1-5%"  so is the 3% really me or just an average.  The average appears to be based on all the women like me only they grouped Stage I and Stage II together and I am Stage I.  So, I don't know if not taking Tamox means my risk is2%, 3%,  6%  or 10% or what.  I also don't know if 6% or 10% is enough to take Tamox or and AI.  I really don't want to take Tamox.  If I do all the natural aromatase inhibitors, etc. and avoid estrogens, etc. is that just as good.  Or should I thank my lucky stars that I avoided chemo and be a good girl and take the drugs?  I trust you ladies on these threads much more than my onc who fought me on getting the Oncotype test and the CYP??? Tamox test.  I can find the charts she uses online all by myself..so the onc has not been much help.  In fact, if I had listened to her I would have done chemo for little if no benefit.  So, I am hoping to tap into all the research you all have done as I can't seem to narrow this down to what my risk really is.  

Luna,

No-one knows if the ooph is the best way to treat breast ER+ cancer or not. I almost entered a clinical trial that removes the ovaries but, I am younger, 44 now, 43 then and decided I was not ready for menopause. Or willing to risk no estrogen in my body.

I was NOT saying it was stupid at all!! Everyone will have a different opinion on the subject, with an oncoDX of ZERO??? With an ooph, you have so little estrogen in your system, I would never risk the side effects of another drug...BUT I am newly diagnosed & just learning, my oncoDx was 6 & I am debating Tamoxifen, if I didn't have young children, I would have ended it with the mastectomy.

Now, this is MY personal opinion OF WHAT I WOULD DO!!

There are girls here who listen to everything the doctors say & girls who think the doctors are clueless, so you will get both sides of the story. What is most important is you do what is right for you & what you can live with.

If you are post menopausal and then have your ovaries out, does your estrogen go down or was it already as low as it can get (other than in body fat) because of the menopause?  Do the ovaries keep making testosterone and progesterone after menopause or do they do nothing?  Since I was postmenopausal when I had my Hysty/ooph, I was thinking of avoiding ovarian cancer and not about hormones as I thought the ovaries had pretty much stopped producing any.

As Fairy says, and as many doctors such as John Lee have proven, it is not just estrogen levels that are the culprit, it is the inbalance of our systems that cause free radicals to morph into cancer cells. Yes, they do seem to latch on to estrogens, but then how do they explain that some people get cancer and are triple neg? Well the facts are that no one thing causes cancer. It is a multifocal disease and if we want to prevent it, we need to look at every aspect of our lives and put it all into balance. We need to learn to eat more nutriously, exercise daily, get our weight under control, learn to destress, clean up our environment as much as we can, etc, etc. We need to go after this disease with a fully armed attack. Just taking a pill is not the only way to go. It may be a good start for some people, but it is still not the be all answer. If you have not done so, check out the iodine and natural girls threads for lots more advice on what else you can do that will help to prevent a recurrance.

It is my understanding that the younger you are, I think it was about 45 and under, the more likely you are to suffer impacts on longevity from having your ovaries removed.  The closer you are to menopause, or after menopause, the less impact it has on longevity.  I'll try to find where I read that and post it when I can.

Karen 

this is my favorite explaination of Absolute versus Relative statistics,

Here's how it works: Let's say that in a trial involving 100 people, two people would normally get breast cancer during the trial duration, but when all 100 people are put on the drug, only one person gets breast cancer, meaning the reduction of breast cancer is one person out of 100. Yet the pharmaceutical industry will exclaim that the relative risk reduction is 50 percent because one is 50 percent of two. In other words, the risk is cut in half from a relative point of view.

The headlines promoting this drug, therefore, will always talk about the relative risk -- "A whopping 50 percent reduction in risk!" -- and these headlines will be parroted by the mainstream press, medical journals, the FDA, doctors and drug marketing reps who are always pushing and exaggerating the supposed benefits of their drugs while minimizing their risks. Because, you see, even though this drug may help one out of 100 people, its side effects create increased risks to all 100 people. Everyone suffers some harm from the potential side effects of the drug, even if that harm is not immediately evident. Yet only one out of 100 people was actually helped by the drug.

When you look at drug claims, especially new miracle-sounding claims on drugs like Herceptin, be aware that these statistics are routinely given as relative statistics, not absolute. The numbers are distorted to make the drugs look more effective than they really are. Herceptin, for example, produced only a 0.6% absolute reduction in breast cancer risk, yet the medical hucksters pushing this drug are wildly screaming about it being a "breast cancer cure!" and demanding that practically all breast cancer patients be immediately put on it. Yet it's not even effective on one person out of a hundred. See my Herceptin Hype article for more details.

Reverse the perspective for natural treatments

At the same time, when conventional medicine promoters want to discredit a natural substance, an herbal remedy or the effects of nutrition on health, they always talk about absolute risk. If taking green tea supplements reduce the risk of cancer by that same 50 percent, eliminating cancer in one out of 100 patients, the news about that supplement would be something like this: "Green tea doesn't work. Only helps one out of 100 patients."

In fact, a study comparing some anti-cancer drug with green tea might report: "New breakthrough drug reduces cancer risk by 50 percent! Green tea only helps one out of 100."

It's the old joke about an Olympic race between the United States and the old Soviet Union. In the race, there were only two participants. The Soviet runner came in first, the U.S. runner came in second, but the U.S. newspapers reported, "U.S. Wins Silver Medal, Soviet Union Comes In Next to Last."

Now you know how drug companies, the FDA, the popular press and many doctors lie with this numerical shell game. It's a clever way to promote the minuscule benefits of pharmaceuticals while discrediting the enormous healing effects of natural remedies.

Now, do you want to hear some real statistics on cancer? I'll share a few. Out of every 100 women who might get breast cancer, 50 of them can avoid breast cancer by simply getting adequate levels of vitamin D in their body, and that's available free of charge through sensible exposure to natural sunlight, which produces vitamin D. This vitamin, all by itself, reduces relative cancer risk by 50 percent, which is better than any prescription drug that has ever been invented by any drug company in the world.

Combine that with green tea, and your prevention of breast cancer gets even stronger. Even the World Health Organization says that 70 percent of all cancers are preventable, and in my view, that number is conservative, because if you combine sunlight therapy and green tea with anti-cancer herbs, anti-cancer foods such as garlic, onions, raw broccoli and raw sprouts, plus some rainforest herbs that are well-known for inhibiting the growth of cancer cells, then you can boost your cancer prevention success to well over 90 percent.

There's nothing in the world of pharmaceutical medicine that even comes close. Yet the only thing you'll ever hear from the drug company-controlled mainstream media, medical journals, the FDA and most old-school doctors is that natural remedies are useless, but prescription drugs have all been scientifically proven. Sure they have, if you fall for the relative risk gimmick and can't do basic math.

Do you all remember Billy Mays, the OxyClean pitch guy who died of a cocaine overdose?  First, they brought up his bumpy ride in an airplane, and then they said it was cardio related.  Well, I was watching the news back then, and they had a doctor come on to speak professionally.  The doctor said, and I quote, "Death is one of the first signs of heart disease."

I looked at him.  I half expected him to burst out laughing and say, "That's a little doctor's humor, there.  But it's true, folks."

He kept a straight face when he said that.  He was serious.

Every body IS different.  Doctors should not be so quick to treat us similarly without assessing our backgrounds.  Older cancer doctors tend to err on the side of "benefits outweigh the risks."  I had one of those.  I changed to a different doctor, too.  He refused to communicate with me, so I left.  Sometimes this feels like amputating a gangrenous finger so that you can continue your career as a piano soloist.  sigh

-sessna1