Should I quit taking tamox? Help!!!
Comments
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Well, here are the relative and absolute chance of benefit from Tamoxifen that my onc gave me from Adjuvant online. My stats are similar to kdholt, except that my tumor was grade 2 and hers is grade 1.
With surgery or surgery/rads only, 18 out of 100 women will have a distant recurrance, that's Stage IV, ladies, within 10 years. Absolute risk of mets without Tamoxifen=18%.
With Tamoxifen, 7 out of those 18 will not be Stage IV within 10 years, 11 still will. Absolute risk of mets with Tamoxifen=11%.
I believe that's a 39% reduction in relative risk. I never even considered the relative reduction in deciding what treatment to take. 7% less absolute risk is enough of a reduction for me that I'm taking Tamox for now. I'm also doing as many complementary treatments as I can because the 11% still scares me.
I think it makes sense to consider your quality of life while on it if you're having lots of problems with it - I'm not. I would also consider what is your risk of any of the Tamox complications you're worried about compared to how much does it lower your chances of mets.
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I'm on Tamoxifen too -- only for about 2 wks so far, so I don't know if I'll have side effects or not, but I plan on sticking w/it. I think it's great to do the natural stuff, but unless I get bad side effects, I'm not turning my back on the benefits regular medicine can give me too.
Rabbit_fan: What are the "complimentary" treatments your are talking about? Supplements?
My oncotypedx was 12, so I was able to skip chemo and go straight to radiation. I am wanting to do some supplements though. Looking at Flaxseed and DHA, D-3 and Resvertol. (Skipping the resvertol pill tonight -- substituted a glass of red wine.
) I will say this: I think it's great for people to make changes in their diet/lifestyles to become more healthy. But, (not to burst any bubbles for staving off cancer by doing that), I have exercised almost my entire adult life, eaten very little red meat, lots of vegetables, been on a low carb diet for most of the last 12 yrs,, never been more than 8lbs. over what I consider to be my ideal weight ( dr. said I was fine when I thought I was heavy) and have great long lived family genes. I have not exterminated my house in years, put no chemicals on my lawn ( don't want the dogs walking on it and I don't want to be around it!) I quit drinking diet soda 5yrs. ago and hardly ever drink/eat anything w/artificial sweetener of any kind. And I got cancer. Go figure! I could have been smoking and eating fried foods and the heck w/the weight for the last 30+ yrs. and outcome would have been the same! There is nothing I can point to in my lifestyle that says I should have gotten cancer, except maybe the part about not having kids. But, I've run on to a lot of childless women who haven't had cancer. So, how big of a risk factor is that considered to be now? There is no doubt that adopting healthy habits will assist in dealing w/any illnesses that come our way, so it's a good idea to make the changes necessary to get healthy.
By the way, how do you add the below the line info on the diagnosis and treatment to your posts? All my "healthy living has NOT made me computer literate!
Karenanne -
kmf - there is a ton of info here on the alternative and complementary forum.
I was talking about supplements - I'm taking D3, melatonin, I3C, calcium d-glucarate, medicinal mushrooms, green tea, turmeric, high-EPA fish oil, flaxseed/oil -- all have a role in either decreasing tumor invasiveness, or creating a more beneficial estrogen state in your body. Also avoiding all animal foods except whey powder. And walking 1/2 hour every day. There are quite a few good books on this subject, and also the Life Extension website has lots of valuable info: http://www.lef.org/protocols/prtcl-022f.shtml
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Since the study is still ongoing, full results are not published yet. But here is an abstract of preliminary results from SABCS2007[48] ATLAS (Adjuvant Tamoxifen, Longer Against Shorter): international randomized trial of 10 versus 5 years of adjuvant tamoxifen among 11 500 women
preliminary results.
Peto R, Davies C, on Behalf of the ATLAS Collaboration.
Background: In estrogen receptor positive (ER+) early breast cancer, 5 years of tamoxifen substantially reduces the annual recurrence rate throughout the first decade (years 0-9). Despite this, appreciable risks of recurrence remain, and are persistent. Even with 5 years of tamoxifen, the annual recurrence risks for ER+ disease are comparably high during years 0-4, years 5-9 and years 10-14 (and perhaps beyond). It is not reliably known how 10 years of adjuvant tamoxifen compares with the current standard duration of tamoxifen, which is just 5 years.
Methods: During 1996-2005, ATLAS randomized 11 500 women (59% ER+, 41% ER untested) in 420 hospitals in 38 countries who had completed
5 years of adjuvant tamoxifen between continuing for another 5 years (ie, to a total of 10 years) and control (ie, stopping). The annual follow-up recorded information on compliance, hospital admission(s), breast cancer recurrence (including new contralateral disease), incidence of other new primary cancer, death and cause of death. Halfway through the trial treatment period, 83% of those allocated to continue and 4% of those allocated to stop were still taking adjuvant tamoxifen; <1% had switched to any other adjuvant hormonal treatment.
Results: During48 000 woman-years of follow-up after randomization (mean 4.2 years per woman), the annual recurrence rate in each of the two treatment groups was approximately constant during and after the five-year trial treatment period (ie, during years 5-9 and 10-14 after first starting tamoxifen). Some 1500 recurrences have been reported, 1300 during years 5-9 but, in these preliminary results, only 200 during years 10-14. Overall, the recurrence rate was significantly lower among those allocated to continue tamoxifen. There was no significant heterogeneity in this recurrence rate reduction with respect to ER status (ER+ or ER untested), time period (years 5-9 or 10-14), age or nodal status (at the time of diagnosis). There were 700 deaths after recurrence (mostly from breast cancer) and 500 deaths before recurrence (all from other causes). Although breast cancer mortality and overall mortality were lower among those allocated to continue, these differences were not statistically significant. There were no significant differences in mortality before recurrence, either overall or from particular causes.
Discussion: This large study shows that continuation of tamoxifen beyond the first 5 years reduces recurrence over the next few years, but further follow-up is needed to assess reliably the longer-term effects on recurrence and the net effects, if any, on mortality.
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Regarding the vegetarian lifestyle/still got cancer - those are some great observations. Thanks for mentioning them.
I think we really do need more empirical studies regarding vegetarians and vegans who've gotten breast cancer. In those future studies, we need to factor in demographics such as: type of veg diet, allergies, genetics, ethnicity, and lifestyle re: xeno-estrogens (preservatives and other ingredients in foods, personal care products, etc. that act as estrogens in the body).
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As a vegetarian who got bc, and is still a vegetarian, I've come to the conclusion that diet and lifestyle are only helpful around the margins. My diet and the fact that I am physically fit and thin may help somewhat in preventing a recurrence. But I put greater faith in the big guns of rads/chemo/tamoxifen. It seems to me that if you can follow a vegetarian diet, or can exercise regularly without giving up too much of what you define as your quality of life (which is what it is all about in the end. I haven't survived cancer to give up the things that give me joy.) then go for it, it may do you good. But I would never rely entirely on such things. Cancer is a formidable opponent.
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Regarding "vegetarian lifestyle/still got cancer." I don't know who you think is saying vegetarian lifestyle is a guarantee against cancer. Most people on the alt forum if they do attempt vegan or near-vegan diet do it in addition to adding supplements that have been recommended based on medical research. One person dropping by to say that one element of this approach didn't prevent their cancer is also not empirical evidence against this approach, which many do in addition to traditional treatment anyway.
Many women can say "I did the big guns of rads/chemo/tamoxifen. And I still ended up Stage IV." Does that prove that those don't work? No, it doesn't.
Even the World Health Organization admits there is a link between diet and cancer. From their website: "Dietary factors are estimated to account for approximately 30% of cancers in western countries, making diet second only to tobacco as a preventable cause of cancer." If you won't believe this that's your choice, but please don't try to convince everyone else that it's false or misinformation when really it's only your opinion that there is no connection.
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Hi, rabbit fan:
I agree with you, lots of people take Tamox and do chemo/rads and still lose the battle. That's not what I was saying at all. What I was saying is that it would be great if more studies in the U.S. focused on the effects of veg lifestyle on breast cancer treatment and outcome...that way, we could learn a little more. For example, are there any patterns as far as the specific demographics I mentioned, etc. I'll try to find the poster(s) to whom I was originally replying.
Edited: I found the posts. See below:
Peace, Lisa
Member_of_the_Club wrote:
I don't know how you could factor diet and that sort of thing into your chances of survival. I have been a vegetarian my entire adult life, physically fit, and I still got breast cancer. I hope my lifestyle will help prevent a recurrence but I don't have a lot of faith in that since it didn't prevent me from getting cancer in the first place.
deni63 wrote:
Member_of_the_Club - I ate a relatively good diet pre-dx as well. But, I did have some chronic issues that I didn't address and that made me uncomfortable. After dx, I had food allergy testing done and found out I was highly allergic to dairy and eggs. I was addicted to cheese! And, I also had chronic migraines, stomach discomfort, and nasal congestion. When I dropped the dairy, many of these issues resolved. I'm not saying that dairy caused my BC, but I do believe that a chronic condition that is ignored for years and years can lead to disease. If your body is constantly battling to keep well and is continually fighting an antagonist, it just makes sense that it could eventually cause a real problem. Just MHO.
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Sdstarfish - I agree there should be more studies done on what the true causes of cancer might be. There is not one cause but a multitude of things going wrong in our systems in order for cancer to develop. From everything I have read, cancer takes years, even decades to develop. If I go back and examine what was going on in my life 10 years or so ago, I find that this is when I first started having regular screening mammos. Plus, I was going through a very stressful divorce, and raising two children as a single mother with no child support. I started drinking 1/2 a bottle of wine per day - every evening just to de-stress. I then started to gain weight and fast forward ten years later, I have BC. My system went through a lot. I would not be surprised if the cause of my dx were a combination of all of those factors - plus some others. I could have had exposures to things I wasn't even aware of. Doctors don't ask those questions to dig into your past and try to determine what the causes of your cancer might be. (Although I have to say my latest onc. does ask many of those questions.) Plus, most don't give you advice on how to move forward to try to bulk up your immune system in order to try to prevent a recurrence. It makes so much sense, but most just don't do it. I do see it happening in the future though. I think things are going to shift at some point. There are small signs of this already. But how many more research $$ need to be spent and lives need to be lost before we really have some answers.
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Greater Survival After Breast Cancer in Physically Active Women With High Vegetable-Fruit Intake Regardless of Obesity. Journal of Clinical Oncology, Vol 25, No 17 (June 10), 2007: pp. 2345-2351 Link: http://jco.ascopubs.org/cgi/content/full/25/17/2345
Conclusions:
"In summary, breast cancer survivors who consume a healthy dietand are physically active may increase their years of survivalafter diagnosis. Specifically, we have shown that those whoreported eating a minimum of 5 VF servings daily and performingweekly PA equivalent to 30 minutes of walking at a moderatepace for 6 days a week had a higher 10-year survival rate thanthose who did not adhere to these lifestyle practices. The improvedsurvival rate was observed in women who were obese as well asthose who were not obese. Adhering to these two health behaviorsreduced the probability of death in the follow-up period by50%, whereas this effect was not seen if breast cancer survivorswere adherent to only PA or VF dietary pattern. "
"Thus, the estimated absoluteunadjusted mortality risk reduction was 6% to 7% at 10 yearsfor women who achieved this pattern, compared with women whoconsumed fewer daily VF servings and/or performed less PA. "
7% absolute benefit is the same that Adjuvant online says I can expect from Tamoxifen. Diet and lifestyle changes 'absolutely' can improve your survival after breast cancer!
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Rabbit_fan - That is exactly why I turned down all treatments after surgery. I get higher benefits with all of the lifestyle changes, no alcohol consumption, low fat consumption than I would with any of the conventional treatments that were offered to me. Plus, I feel really good and lost all of the excess lbs I have packed on.
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Yikes! Good find, Rabbit
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First of all, I didn't say diet and exercise don't work, just that I believe that they work in the margins. I think there is absolutely a benefit, just not as strong a benefit as the medicines. Thats my opinion. I am still a vegetarian, still run 5 miles a day, so obviously I think there is a benefit.
And i felt great when i was diagnosed -- no nagging health issues at all. Couldn't believe I had cancer.
I wish there was a magic bullet, but all we can do is what we can do and then hope for the best.
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I think that the benefits are more than marginal. This link http://74.125.95.132/search?q=cache:http://cancer.ucsf.edu/crc/nutrition_breast.pdf has hundreds of studies that show connections between diet and breast cancer. The original document no longer seems to be available, and I don't know how much longer this link will work, so if you're interested I would print out a copy.
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Deni63 - good for you on losing the extra weight - I had the same experience with my new way of living and I feel great because of it too.
Right now I'm still afraid not to give the Tamox a try. But if such a small change like 5 fruits and veg a day plus 1/2 hour exercise can give an absolute reduction in mortality of 7%, just think what the synergy of ALL of our complementary/alternative treatments must be!
A lot of studies focus on just one thing and still show results, but like David Servan-Schreiber points out, several anti-cancer foods combined show a much higher inhibitory effect on tumors than any of the individual components. Maybe the opposite is true too - the combination of all of the harmful JUNK in the standard diet is far worse than any individual bad food.
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Kdholt, when my first MedOnc gave me the printout from Adjuvant Online I was skeptical of the results which said I had a 33% chance of local recurrence without Chemo and Tamox. I had a Lump with clear margins zero node involvement, 1.5 cm. Er/Pr +, Her2-. I did not make a decision at that time but pushed for an Oncotydx. Many thanks to the ladies here for the information.
Two months later I asked my 2nd MedOnc why the stats were so high and she casually told me that my 1st MedOnc had grouped me in with all classes of BC to get the stats instead of only listing mine. Why would she do that?
My stats have since been adjusted by my second MedOnc to 10% without Tamox and 8% with. She said that had no bearing on my Oncotypedx score which was 9 and calculated my stats to be 4-8 % local recurrence with Tamox. She said my chance of distant recurrence was very, very low. No stat given. She also said she could not give stats if I choose not to do Rads because the stats were based on the assumption that I would have Rads. I choose not to but that is another story.
I mentioned on another thread that my 2nd MedOnc initially wanted me to take Arimidex with Lupron because I am premen. She suggested this because I had concerns about the SE's of Tamox. Upon further questioning she told me that there was no guarantee that Lupron would put me into menopause and that if it did it would only be temporary. Once I stopped the Lupron I would no longer be in menopause. How was the Arimidex supposed to be effective if I was still premen? This one was a no brainer to pass on.
At my next appointment her second recommendation was for me to take Tamox with Coumadin for 2 years to avoid blot clots then switch to Arimidex with the "hope" that I will be in menopause 2 years from now.
It was this final recommendation that solidified my decision not to use the HRT. Her recommendations were made to overcome my concerns about the SE's of the HRT not upon what would give me the maximum benefit. She told me there is a team of bc MedOncs that meet to discuss their cases and make recommendations so I understood why her approaches varied with each appointment. They were making (S*)it up as they went along.
My decision to forego HRT is based on what works best for ME and it did not come easily, Everytime I talk about this I get a sinking feeling in my stomache because I am so disappointed at the conventional options that were presented to me. I found peace with my decision as I believe that my state of mind is crucial to my healing. I hope you are able to do the same.
I posted a few calculators on another thread and I hope they will be useful to you and others. Let us know what you decide and why if you are comfortable doing so.
Edited to say: This was "My" experience and I hope others have better results with their conventional medical teams. I don't think that my Docs are incompetent but I do believe they are sticking to a script and that they were not prepared to answer questions that deviated from the script.
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I was diagnosed with bc in 2003 and being pr+ was advised to take Tamox I refused and decided to use an even more natural diet than I had before I have been a vege for a long time I started taking a dim product.then 4 years later it came back and was strong er+(originally I had surg chemo and rad) I was told to take irimidex and used it for 2/ 1/2 years with very few side effects as I take numerous supplements exersice etc,( I also stopped taking the dim) on a recent bone density scan I have found out that I have osteoporosis so now I have been told to stop taking the al and use Tamox I just cant seem to see the benefits outwaying the risks, I get shot down everytime I mention it to my onc, on the last visit he was very fed up with me I think they just like the patients who do as they say with no questions asked it makes it easier for them.
I have decided to look at my cancer logically if it is my estreogen that is causing it I have to reduce it and if I can do that naturally I certainly would like to try that. increasing exercise more cruciferous veg etc. I know a lady that took Tamox for 5 years had the all clear Dec 08 now has cancer allover. MyOnc was so annoyed with me he gave me a script for Tamox and Arimidex on the same script and said make up you own mind. I seriously will be looking elswhere for a woman onc. Why do they not understand that we are not trying to do their job but are looking for answers to save our lives.
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Mellody - SO SORRY you got that response from your ONC. That is BS.
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Thanks ladies for all your posts. I met with a pharmacist who compounds all his own scrips. He is also well read in nutrition and supplements. He is working on getting certified as a cancer coach. He came highly recommended to me and he is a very smart man. He did give me his "opinion " of tamox when I pressed him on it and recommended I read Dr. Lee's book, which I have since done. As of right now I am not on tamox. Most of the time I am ok with that but other times I really agonize about whether I am doing the right thing. I would have these same feelings on the tamox though too. I just need to make a decision and not look back. I guess what I really want is a crystal ball. Anyway, I am going to get my hormones, iodine and thyroid functions and cortisol(?) levels checked and start from there.I take lots of supplements as well as dim and am praying they will work for me. Like you I too know a lady who did chemo rads and tamox and now many years later she has developed triple neg bc and it is all over. You can do everything right and still it can come back. My onc told that clinically my cancer was not very aggressive-whatever that means- so I am clinging to that fact as i try to make a decision I can be at peace with. I may need to leave the boards for a while because just when I think I made my decision I read something that makes me second guess myself. I hope all of you are able to find peace with your decisions and again if there are any of you early stage bc survivors that didn't do anything beyond surgery and rads and are still doing great it would be awesome to hear from you.
God bless,
Debbie
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Lots of good sharing of information on this thread. Even the American Cancer Society came out just before Christmas and admitted that vegetarian diet was probably better for breast cancer!
My oncologist said from knowing me, she felt the least medical intervention, the better.
Remember, ladies it is body, mind and spirit to fight this "dis" ease. So, medicine alone is not the only answer. Our bodies want to be healthy and when we are at "dis" ease, cancer cells can grow and cause problems.
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Member_of_the_Club, you wrote: "wish there was a magic bullet, but all we can do is what we can do and then hope for the best." Indeed, I have to agree with that.
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I have to agree with that too.
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Hi, I just started taking tamoxifen about two weeks ago and I take it at night so I don't experience the nausea.
However I am now very confused about the decision to discontinue its use since so many people are speaking against taking it.
was diagnosed as: DCIS grade 2; AJCC stage 0; 94%ER; 14%PR; I am 57 this January.
Can somebody out there please set matters straight for me? All the these stats are making me dizzy!
Pls. help!!!!!!!!!!!!!!!!
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Hi nanasewah .....I was also afraid to try something new, but I have taken 6 pills now, & have NO side effects yet! I think the benefits out-weigh the side-effects! You can listen to us, AND your Oncologist....There is another thread, "Bottle of Tamoxifen" on this site, & those women have been taking the big T for years! I put it off also, but so glad I am taking this final step to prevent cancer from coming back!
If you have a lot of side effects, then ask your Doctor....I hope the best for you, Jeannette
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Thanks Jeannette for your encouragement 'cos I was so confused. I will continue taking it and see what happens. God help us all!!!!!!!!!!!
Best wishes to you.
Peace!!!!!!!!!!!!!!!!!!
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Hi nanesewah......! I am going to a different Oncologist on the 2nd, & I'm going to ask her for the swab test..The Oncotype test I think......... That will tell if your body is metabolizing Tamoxifen as it should! I take it with a baby aspirin in the morning, with a smoothie made with orange juice, aloe vera juice, & a banana & a little flavored fat-free creamer! Then during the day I take 5 more vitamins, just to make me think I am gettting healthier..
I'm still confused also, but will take T. as long as I can, & don't have many side effects! Jeannette'
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I'm just back from seeing my Onc. Told her I was thinking of dropping the Tamoxifen because my night time hot flashes were interfering with my sleep. She was just back from a conference in San Antonio, I believe, with all the big wigs. The news was that if you are having hot flashes because of the tamoxifen, then your body has the ability to benefit from taking tamoxifen. If you don't have that side effect it is likely not to benefit you. Sorry I don't remember the specific medical terminology she used but thought this might help some who are struggling with whether to continue or not.
I am still struggling with the decision myself. I'm just now reading Dr. Lee's book and think it makes a lot of sense to test hormone levels, thyroid function etc and then take appropriate action to bring the body back into balance. My problem is I live in a relatively small town and have no idea how to go about finding a doctor who will help me with all of that but I'm going to start looking. Any suggestions would be appreciated.
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Maitre-- I just sent you a private message.
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I just finished reading through the posts on this thread and felt I had to add my two cents. In 1998 I was diagnosed with Stage I breast cancer. I had a lumpectomy, followed by AC chemo since I was premenapausal and radiation. I then took Tamoxifen for five years. At the time, I wondered if it was over kill. Was I doing more harm than good?
I did develop hyperplasia and had a hysterectomy. I did develop distant mets nearly eleven years after my original diagnosis. At the time, my oncologist told me that studies indicated that Tamoxifen helped protect women for up to ten years and I do feel that is just what it did in my case.
Now that I am stage IV, I started taking Arimidex. It has recently stopped working and I have now switched back to Tamoxifen. After seeing how well Arimidex worked in shrinking the tumors, I have become an even stronger believer in doing everything you can to fight this disease. I am hoping the Tamoxifen will do its job and kick in as well. Do all the drugs work the same in each of us? No, of course not. I think diet and exercise are extremely important, but I don't think they are enough. If you can tolerate Tamoxifen, then I think the benefits far out weigh the risks. Please do everything that you can to fight this disease.
By the way, I was ER+ in 1998 and still am ER+.
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When Arimidex fails, oncologists at major cancer center are using Estradiol.
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