For those who refused Tamoxifen x-posted Hormone tx
I'm a pretty alternative crunchy hippie kind of gal. I did do my chemo, herceptin, and radiation and I'm due to start the Tam. Well, I was due back in Feb but I've been putting it off! My ND has had me on things to help me metabolize estrogen and I eat to reduce estrogen but being 95% ER/PR +, I'm still really nervous about not taking the Tam. But all the side effects scare the crap out of me.
My question is, were any of you very highly ER+ and decided against Tamoxifen?
Comments
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There is a whole thread called something like "Did Anyone say no to Tamoxifen?"
I read through it after I finished chemo and was going through rads and getting ready to start Tamox. It scared the CRAP out of me. I was absolutely terrified about turning into a raving emotional irritable BITCH and terrorizing my husband. In fact, I made him go to a counselor with me so we could PRACTICE what to do if that happened. (I am usually very low key and knew he'd be totally perplexed if I changed like that.) I think my husband AND the therapist BOTH thought I was nuts. They kept saying "Just take it and see how it affects you" but I was terrified and felt I needed to be prepared. So...I started taking it and NOTHING happened. Well, I did gain some weight (which I am working off now), and had some hot flashes (not unbearable). But I didn't have any of the mood swings/irritability/depression I was so afraid of.
I take a lot of supplements as well as DIM to help modulate the estrogen I do have (or something like that - not exactly sure how to explain it). And I take ground flax daily. So maybe those help. I don't know.
I considered not taking the Tamox - i really strongly considered it. I was 85% ER+. I talked to my integrative physician about it (naturo-doc), and his take was "You are dealing with a disease that has been highly funded, researched, studied. Go with the protocol and we will work around it to minimize the SEs and keep you healthy." At the end of the day, I just wasn't convinced enough to NOT take the Tamoxifen, even with all the controversy surrounding it. I am 10 months in and it is going fine.
I also do a lot of behavioral stuff to keep estrogen low. No drinking, low fat, no sugar, lots of exercise, supplements etc. I NEVER want to hear those words "You have cancer" again, and while none of this stuff guarantees that outcome, I want to do everything in my power to increase my chances of success.
I know it is a hard decision. There are lots of ladies who did not take it and I'm sure they will chime in. Just wanted to share my experience.
Good luck. I wish you peace in whatever decision you make.
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Hi Twinnom,
The pathology of my tumor was ER+100% and PR+100% and after chemo I started Tamoxifen, I took it for 9 months until a pelvic ultrasound showed 2 large ovarian cysts that weren't there before, I asked the gyn if they could have been caused by the Tamoxifen and he said he doubted it and began to talk about surgery to remove my ovaries...what a blow!!! I could hardly drive back home...When I stopped crying I consulted Dr. Google and read for hours about the well documented link between Tamoxifen and ovarian cysts in premenopausal women...So I made my mind up to: 1º) Find a new gyn 2º) Stop the Tamoxifen 3º) Closely monitor the cysts and 4º) Keep my ovaries. Three months later I had another pelvic ultrasound with my new gyn and the cysts barely showed...
I'm not against Tamoxifen, in fact a lot of women take it with virtually no side effects, I wish I were one of them but I'm not...Maybe you could give it a try and see how you feel on it..?
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I didn't say no to it. My Dr said no for me. My cancer was half the size of yours.
I'm now stage IV at the age of 43. 2 minor children at home, and a 21 year old.
Please, please think long and hard about your decision.
Lisa
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I had the opposite refusal. I didn't do the chemo or herceptin despite a very high Oncotype score and being HER2+.
I am taking the Tamoxifen (which along with other hormonal treatments has consistently been shown to be the most effective treatment available to hormone receptor positive women). I have some side effects. They are all things that I can live with, and that is the key, I intend to LIVE!!!!!
Maybe because I didn't do the chemo thing, I feel more invested in the Tamoxifen. That may be helping me keep taking it every day. It has been over two years, and while I look forward to finishing my 5 years, it really isn't that bad at all. The vast majority of women have side effects that are relatively minor, and those that aren't seem to resolve quickly once someone stops taking the drug.
There is nothing that says you can't do all the things your ND is helping you with now, and add the Tamoxifen too.
Follow your heart, and make the choice that will bring you peace of heart and mind during a long, healthy life.
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I was 90% ER+ / 80% PR+, but I refused, for two reasons:
1. I only had DCIS, so not life-threatening, and
2. I want to have a baby (or babies)... I am in my late 30's so going into menopause for five years is not an option for me.
Also, in the past, diet and lifestyle changes have worked for my estrogen balance more than drugs. I am choosing that route this time as well. If I had children at home or had an aggressive cancer, I can't say what I would choose, but this is my choice being in the situation I'm in now.
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Yes. I was ER + and I decided not to take Tamox. I am post meno...decided not to take AIs either. I do everything I can nutritionally and with supplements to lower my estrogen. My estradiol is down to 15. Just do your research. Pray. Listen for that voice inside you that says "Hey, maybe you should consider the Tamoxifen." My inner voice was a loud NO! so I went with that.
This decision making on BC just sucks doesn't it? I wish there was just one right answer for everyone...but sadly there is not. You have to research until your brain hurts and then you will know which of the argued paths you want to choose for you. If you embark on it and continue to have second thoughts...go back to the drawing board 'cause maybe you really wanted to choose another route.
I am confortable with the path I have chosen. I know if this dreaded disease comes back for me, my kids & husband and relatives will all be angry and say I chose wrong. But, if I had done all the various drug protocols and got it back...they wouldn't say "Well, you shouldn't have done the chemo, rads, TAmox, AIs....You should have done all the natural things." would they????? There is no guarantee for anyone including those who don't have it yet.
Sorry you have to be deciding this at all.
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I just want to say you shouldn't be scared off by the posts. I took tamoxifen for five years and tolerated it well. Then I decided to switch to Arimidex and i was terrified of that because of all the posts on these boards. But here I am, two months in on Arimidex, and it is totally fine.
Lesson learned. The vast majority of women on tamoxifen have no or minimal problems. You might try it for 6 months and if you are one of those with bad side effects, go off of it.
I don't know if I would be alive today without tamoxifen.
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Thank you everyone for your responses. I think this is the part of treatment I've had the hardest time making a decision with...I mean I struggled with decisions with regard to chemo and rads but I've been putting this off for nearly 6 months now. And it's hard when I get so many conflicting ideas from different docs. But like my ND says, I can always start it and see what happens and if I can't tolerate it then we go to plan B...Whatever that is!
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No Tamoxifen for me. There are lots of Tamoxifen abstainers here who have answered this question before. They get tired of the "you'll die" types chiming in without any facts.
I was told to check the overall survival statistics for Tamox and they are in the low single digits. Side effects: uterine cancer, blood clots, vaginal discharge, headaches, insomnia, fatigue, depression, weight gain, ovarian cysts, etc. All you need to do is read the manufacturer's information on the drug company site. Look them up at the source.
Also, a study recently showed those women who took anti-depressants to combat Tamoxifen's side effects died sooner.
There are other strategies. Don't let people scare you.
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Whoa, the study about anti-depressants is controversial -- some studies have not found this effect -- and it only applies to some anti-depressants. Talk about scaring people. Its really important to get that right because for some people, anti-depressants are really life saving. No one should abstain from taking tamoxifen based on fear either. Your figure about survival has been debated elsewhere but referring to lisa in such dismissive terms is insulting. Her experience is an important one to consider.
I don't know if I would have taken tamoxifen if I had DCIS. That does sound like over medication to me. But at stage IIb and with a cancer that was also 95% er/pr+, I felt it was an important tool for preventing a recurrence.
I was on tamoxifen for the full five years and did not have any of the side effects on your list. Well, insomnia, but I was a terrible sleeper before bc so I can't blame the tamoxifen. I noticed you put the worst ones first, but those are also the least like to occur, very, very rare.
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I left out most of the side effects. No wonder half of the patients stop taking it.
WARNINGS from the Tamoxifen Manufacturer http://www.druginfonet.com/tamoxfen.htm
Visual disturbance including corneal changes, cataracts and retinopathy have been reported in patients receiving Tamoxifen Citrate Tablets.As with other additive hormonal therapy (estrogens and androgens), hypercalcemia has been reported in some breast cancer patients with bone metastases within a few weeks of starting treatment with Tamoxifen Citrate Tablets. If hypercalcemia does occur, appropriate measures should be taken and, if severe, Tamoxifen Citrate Tablets should be discontinued.An increased incidence of edometrial changes including hyperplasia, polyps, and endometrial cancer has been reported in association with treatment with Tamoxifen Citrate Tablets.
The incidence and pattern of this increase suggest that the underlying mechanism is related to the estrogenic properties of Tamoxifen Citrate Tablets. Any patients receiving or having previously received Tamoxifen Citrate Tablets who report abnormal vaginal bleeding should be promptly evaluated.In a large randomized trial in Sweden of adjuvant Tamoxifen Citrate 40 mg/day for 2-5 years, an increased incidence of uterine cancer was noted. Twenty three of 1,372 patients randomized to receive Tamoxifen Citrate versus 4 of 1,357 patients randomized to the observation group developed cancer of the uterus [RR = 5.6 (1.9-16.2), p< 0.001]. One of the patients with cancer of the uterus who was randomized to receive Tamoxifen Citrate never took the drug.
After approximately 6.8 years of follow-up in the ongoing NSABP B-14 trial, 15 of 1,419 women randomized to receive Tramoxifen Citrate 20 mg/day for 5 years developed uterine cancer and 2 of the 1,424 women randomized to receive placebo, and who subsequently were treated with Tamoxifen Citrate, also developed uterine cancer.
Most of the uterine cancers were diagnosed at an early stage, but deaths from uterine cancer have been reported. Patients receiving Tamoxifen Citrate should have routine gynecological care and they should promptly inform their physician if they experience any menstrual irregularities, abnormal vaginal bleeding, change in vaginal discharge, or pelvic pain or pressure.Tamoxifen Citrate Tablets have been associated with changes in liver enzyme levels, and on rare occasions, a spectrum of more severe liver abnormalities including fatty liver, cholestasis, hepatitis and hepatic necrosis. A few of these serious cases included fatalities. In most reported cases the relationship to Tamoxifen Citrate Tablets is uncertain. However, some positive rechallenges and dechallenges have been reported.In the Swedish trial using adjuvant Tamoxifen Citrate 40 mg/day for 2-5 years, 3 cases of liver cancer have been reported in the Tamoxifen Citrate-treated group versus 1 case in the observation group. In other clinical trials evaluating tamoxifen, no other cases of liver cancer have been reported to date.
Data from the NSABP B-14. study show no increase in other (non-uterine) cancers among patients receiving Tamoxifen Citrate Tablets. However, a number of second primary tumors, occurring at sites other than the endometrium, have been reported following the treatment of breast cancer with Tamoxifen Citrate Tablets in clinical trials. Whether an increased risk for other (non-uterine) cancers is associated with Tamoxifen Citrate Tablets is still uncertain and continues to be evaluated.Pregnancy Category
Tamoxifen Citrate Tablets may cause fetal harm when administered to a pregnant woman. Women should be advised not to become pregnant while taking Tamoxifen Citrate Tablets and should use barrier or nonhormonal contraceptive measures if sexually active.
Effects on reproductive functions are expected from the antiestrogenic properties of the drug. In reproductive studies in rats at dose levels equal to or below the human dose, nonteratogenic developmental skeletal changes were seen and were found reversible. In addition, in fertility studies in rats and in teratology studies in rabbits using doses at or below those used in humans, a lower incidence of embryo implantation and a higher incidence of fetal death or retarded in utero growth were observed, with slower learning behavior in some rat pups when compared to historical controls. Several pregnant marmosets were dosed during organogenesis or in the last half of pregnancy. No deformations were seen and, although the dose was high enough to terminate pregnancy in some animals, those that did maintain pregnancy showed no evidence of teratogenic malformation.In rodent models of fetal reproductive tract development, tamoxifen (at doses 0.3 to 2.4-fold the human maximum recommended dose on a mg/m2 basis) caused changes in both sexes that are similar to those caused by estradiol, ethynylestradiol and diethylstilbestrol.
Although the clinical relevance of these changes is unknown, some of these changes, especially vaginal adenomas, are similar to those seen in young women who were exposed to diethylstilbestrol in utero and who have a 1 in 1000 risk of developing clear-cell adenocarcinoma of the vagina cervix. To date, in utero exposure to tamoxifen has not been shown to cause vaginal adenosis, or clear-cell adenocarcinoma of the vagina or cervix, in young women. However, only a small number of young women have been exposed to tamoxifen in utero, and a smaller number have been followed long enough (to age 15-20) to determine whether vaginal or cervical neoplasia could occur as a result of this exposure.There are no adequate and well-controlled trials of tamoxifen in pregnant women. There have been a small number of reports of vaginal bleeding, spontaneous abortions, birth defects, and fetal deaths in pregnant women. If this drug is used during pregnancy, or the patient becomes pregnant while taking this drug, or within approximately two months after discontinuing therapy, the patient should be apprised of the potential risks to the fetus including the potential long-term risk of a DES-like syndrome.
PRECAUTIONS General: Decreases in platelet counts, usually to 50,000-100,000/mm3, infrequently lower, have been occasionally reported in patients taking Tramoxifen Citrate Tablets for breast cancer. In patients with significant thrombocytopenia, rare hemorrhagic episodes have occurred, but it is uncertain if these episodes are due to therapy with Tamoxifen Citrate Tablets. Leukopenia has been observed, sometimes in association with anemia and/or thrombocytopenia. There have been rare reports of neutropenia and pancytopenia in patients receiving Tamoxifen Citrate Tablets; this can sometimes be severe.Information for patients: Women taking or having previously taken Tamoxifen Citrate Tablets should be instructed to report abnormal vaginal bleeding which should be promptly investigated.
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Not trying to scare anyone, Jane. It's a very personal decision. I would never put someone else down for choosing to do something different than I. Never.
I also know what happened TO ME. Not a statistic. Me. A Mom. A wife. A daughter. A friend. Someone that loves the beach. Who dreams of going to Hawaii "some day". A person that loves her life.
40 years old. Active. Thin. NO health issues. No family history. Tiny little cancer that was treated with bilateral MX only. Went on living my life, never thinking it would come back. "your chances of getting killed in a car is greater than the cancer returning". Here it is 2 1/2 yrs later, and I'm having to tell my 14 yr old daughter that it's back.
I didn't chime in on a discussion without facts. I *am* a freakin walking FACT of what can happen. Do I know 100% that the cancer would have stayed away if I had been given Tamoxifen? Of course not. But, what I do know is that since the stage IV diagnosis all I have been given is anti hormonal therapy. Slight regression on last scan. Yay for me! I can't help but believe that if it's working now, it would have worked then.
And just one more thing: Twinmom ASK the question. She did not ask that "you'll die types" not respond. I thought she wanted an answer. No made up facts. No controversial studies. Just an honest answer. And that is all I gave her.
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Lisa, I'm sorry for your situation but as you have seen, the Stage IV boards are filled with women who did everything right by the book and still got to Stage IV.
And Twinmom asked who was ER+ and didn't do Tamox. That would entitle me to answer (her polling) as well as to give further scientific information which was my rationale for the decision. Please let me know if you think this board is just for personal anecdotes and not for information.
By the way, I did choose alternatives to Tamoxifen.
I wish with you the best on your continued strategy and good results. We can choose different paths to the same place.
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Hi Twinmom,
I am 95% ER positve and would like to share my experience with Tamoxifen.
I had stage 2b ILC and had taken chemo and rads and then began Tamox. The first few months the worse side effect I had was major hot flashes. But as time passed my thinking was obviously foggy. By the 6 month or so I started having severe muscle spasms in my legs (every 15 min). My onc tried several things to lessen the spasms but nothing helped. The longer I was on it, the more cloudy my mind was becoming also. By the 11th month my legs were so sore I could barely walk and I was lucky if I even knew what day it was. I went in for my monthly check up and my onc and I decided maybe its not in my best interest to continue taking Tamox. I then took Arimidex for about 2 weeks and after suffering even worse side effects with that..I went off it too. For about 2 yrs I was on nothing but I went in for 3 month check ups and all seemed to look fine. I was thinking about trying another AI but never got around to it. Long story, short...I was diagnosed with mets in Dec 2006. I now take Aromasin and its working at keeping the beast at bay. I do have side effects from Aromasin but the worst is hot flashes and gaining weight.
Looking back.......I wish I wouldve taken either an AI or Tamox no matter how bad the side effects were. Please do not think I am preaching at you to try and get you to take Tamox........I am making myself feel better by making sure you know that not taking it can have bad consequences. Its a personal decision for each of us. I wish you the best..Hugs, Mazy
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"Please let me know if you think this board is just for personal anecdotes and not for information."
Hu? What on earth made you say that?? I will say that I don't think this board is for calling others "you'll die types" simply because their point of view is different than yours. I understand you are passionate about your stand. Good for you. I will never try to belittle you or tell you that you are wrong. All I ask is for the same respect.
I wish only the best for you as well, Jane. Honestly. No one deserves the hell we ALL are put through. No one.
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Janeluvsdogs.... The Stage IV are full also (and in a higher number) of women who DIDN'T take Tamoxifen - or didn't do everything right. There was no reason to be so rude just because certain baloons got popped.
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I didn't read all the responses. So, sorry if I repeat. It is YOUR choice. May I suggest what most will suggest: try it. Most have NO side effects, and estrogen is produced in your body fat and brain. No matter how slim you are, you Do have body fat.
Now, with your stats, It is a good recommendation for you to try the med. If you cannot tolerate it (and you mostly hear from those who cannot---after all, why post if all is well?) then you can make an informed decision to either take a holiday from the med and try again (works well for some) or stop it for good.
I was strongly ER pos. I took it for 2 years, hated the joint pain and we tried Aromasin. That wasn't good either, so I took a holiday. I felt better in a week. I am over weight, btw. Now, at My age, it wasn't a big whoop, I also have had a hysterectomy, left the ovaries. So, I had a lot backing my stopping, the biggest being that most recurrances are found in the first 2 years after dx. The most important to me was my quality of life without joint pain.
That's My story. I look forward to hearing what you decided For Yourself.
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I decided against the Tamoxifen. I had DCIS, a very small tumor-- 2.4mm. Yes, that is what you read. It was small. Mine was 98% ER, 98% PR. I have opted out of the Tamoxifen. I have, at times, wondered if it was the right thing to do, especially when all the oncologists and docs asked me incredulously "Why???" but it felt right for me. That being said, if I had a recurrance or if I had more invasive BC, I probably would have chosen to take it. I am praying that my DCIS was just a one-off occurance, but it's a gamble, since we never know which ones turn invasive and which ones don't....
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I was very scared of the Tamoxifen, and was not convinced that I actually needed it. But I decided to TRY it...knowing that if it was horrible, I could always stop taking it. It's now been 5 weeks and I've had no problems at all with it! No side effects, not even a hot flash!
What helped me with the decision was spending several hours one night totally deconstructing my pathology reports, MRI report, mammography report, etc., and Googling all the words I didn't understand, until I had an accurate picture of what's going on in MY breasts/body and what my risk factors are. Because I realized it wasn't so helpful to base my decision upon opinions of women on a message board, when the fact of the matter is, EVERYONE's cancer and body is DIFFERENT. I decided to try the Tamoxifen because I was diagnosed at age 30 with a 1.5 cm grade 2 mucinous tumor, 3 cm of grade 2 DCIS with necrosis, and have heterogenously dense breasts with adenosis and stomal fibrosis and atypical ductal hyperplasia, an intermediate Oncotype score, and am highly ER+ and PR+. That's me, not anyone else...
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Jane, for someone who questions mainstream medicine, you've copied the drug insert verbatim which is odd. Let's take cataracts. I have looked at those studies in depth because I have cataracts. What they found was that women who had small cataracts going into tamoxifen often had them increase. It wasn't that the drugs caused the cataracts, it just increased them -- which happened to me, though I still don't need cataract surgery. I had my cataracts before starting tamoxifen. My ophthalmologist has never seen the retinal side effects of tamoxifen in all her years of practice. So there is something distorting about listing all the side effects like that. Thickening uterus is far more common than, say, vision changes and all of these SEs happen to a minority of women.
There are also positive benefits to the estrogenic qualities of tamoxifen. Women on the drug have stronger bones and lower cholesterol.
As many of us have said, its a personal decision and its also a reversible decision.
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Exactly, what is odd about citing the research from the actual drug company for accuracy--- and get away from the "I'm just doing great" personal anecdotes?
Is it only the non mainstream posters who post evidence?
I would happy to provide more statistics and evidence from mainstream medicine that shows that in node negative women Tamoxifen has no value 96.5% of the time.
And no, Tamoxifen is not necessarily a "reversible decision." You might want to look up uterine and liver cancer not being reversible.
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I was also terrified to take Tamoxifen. Have said this before on one of these forums...I actually remember thinking, the day before my first dose, "This is the last time I will feel like myself."
15 months later, I feel fine. Put on some very stubborn weight - resistant to diet and exercise, but so what? My eyesight has changed. New Rx contact lenses corrected that. My eye doctor says he sees a lot of women who experience sight changes with Tamoxifen.
As someone said above, the decision-making is brutal with this disease. We all pick a path that makes sense to us. Anyone who wants to tell us we're "wrong" can stuff it.
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Uterine and liver cancer is EXTREMELY rare.
I also had a tiny amount of DCIS. Tamoxifen was optional for me. Rads were not recommended.
I tried it. It's been almost three years. I had a bit of flashes in the beginning, lost 5 pounds and kept them off, and went on with my life. I feel like it's an insurance policy for me. I was highly er/pr +.
Like everyone else said, it's your decision, but why not see what's it's like for 6 months. All meds have se's, even advil, but most of the time they are mild. Personally, it has given me some peace. That's worth a few flashes now and then.
Sorry about the way my post showed up. Can't figure out how to fix it!
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What percentage of women on tamoxifen get uterine cancer? Today's stats, not the old days when they were using larger doses. And what percentage get liver cancer? Any? You are the one who doesn't like scare tactics, but you raise the prospect of extremely rare SEs, so give us the stats.
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You were diagnosed in 2004 and you never personally looked up the stats yourself?
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Making the decision to take Tamoxifen or an AI is a very personal decision. And a great deal of that choice depends on your age and diagnosis.
I tried both and quit. I was 51 at the time of my dx and had a small, node negative tumor, with lumpectomy and very wide margins all round, as well as 8 weeks of radiatoin. I also had a prior total hysterectomy.
After trying Tamoxifen and Arimidex, it took me many months and much research to make the decision (AMA I might add) to quit those meds. I was 100% ER+. The SE's I had were nausea and depression and they couldn't be controlled while I was taking the antihormonals.
Will I regret my decision if the cancer comes back ... probably not ... but I will have a weapon in my arsenal to use in the future.
EDITED .. as far as stats go, Tamoxifen and/or AI reduced my risk of recurrence by 3 to 4%. I also took that into consideration when making my decision. Thereby raising my risk from 95% to about 90% cancer free at 5 years.
I'm 3 1/2 years out ... and hope to make it to 5 w/o the medication.
As I always post, this was a very personal decision ... and I do not recommend my choices to others.
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Jane, I think the reason people react so strongly to your posts is the way you proselytize. If you read through this thread you will see women who chose tamoxifen and women who didn't, all saying "this is my story. This was why I made my decision." They aren't saying "people who choose a different approach are wrong," and they certainly don't engage in name calling.
Where did you get that stat on the low benefit for node negative women? At least you're acknowledging that those of us with positive nodes have a greater incentive.
Many of us put the stats for our cancers on our posts. This is personal information, of course, but it does help readers understand the poster's decision. If a woman with DCIS decides not to take tamoxifen, thats a very different decision than if a woman with positive nodes decides not to take tamoxifen. I wonder what you dealt with since you are so aggressive in promoting your approach. Invasive? Nodes?
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I was well aware of the stats when i was diagnosed but that was some time ago. I had a fairly large sized tumor with a positive node and it was highly er/pr+. My benefits from tamoxifen may have been greater than from the chemo, it was certainly substantial. My children were 5 and 8 at the time and it was a no-brainer for me to do everything I possibly could to prevent a recurrence. And more than five years later, I am alive, strong, thinner than when I started, happy.
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MOTC .. I agree with you ... big difference in our dx .. and even the ages of our children. My son was 30 when I was diagnosed. I just wish I could say I was thinner now. I have a menopause belly I can't get rid of. Although, I can say I'm a lot sassier than I was pre-diagnosis!
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MOTC, since when is posting evidence proselytizing? Facts are facts. You keep wanting to bring personalities into this.
Please let the facts speak for themselves and stop with the ad hominem attacks. There is really no point in discussing this if you want to talk personalities and not about evidence.
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