Great news about tamoxifen
From the breastcancer.org homepage:
http://www.breastcancer.org/treatment/hormonal/new_research/20110728.jsp
Survival benefits still exist 15 years after starting the drug, meaning 10 years after stopping it, meaning that for many women it provides a cure, it doesn't just postpone a recurrence.
Comments
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Thank you for posting this. It is always wondeful to read hopeful positive information about treatments so many of us are doing.
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What are you trying to say Susan???? That evidence-based research is all wrong?
I think this is amazing news, and something all of us need to pay attention to.
Thanks so much Member for posting this. I also think these findings most likely apply to AIs.
I am thrilled that we live in a day and age where most early stage breast cancer is curable. - Claire
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I think the social media referred to are things like Facebook, MySpace, Twitter and even Groupon:
(and I don't like the idea!)
But my understanding is that such stealth marketing involves brand names -- and not research reports about a generic compound such as tamoxifen. .
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This is the website which is the source of the LONG information being posted. Seems easier to just give a link, then anyone can decide if this is where she wants to get information.
THANKS MOC. Great thread - or at least it was as you started it. THANKS to BCO too for this wonderful news.
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There is a difference between absolute and relative benefit, yes. If your chances of survival are already very high, NO treatment will provide much benefit. So if you have DCIS or a very early stage bc you won't get a lot of benefit from tamoxifen. But if you were node positive, as I was, the benefit can be substantial. The point of this study is that the benefit lasts. There was some concern that tamoxifen merely turned off the cancer cells but what this study indicates is that it kills them, by depriving them of the estrogen they need to survive. Nothing in the previous post contradicts this.
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thanks AGAIN MOTC. I'm sorry you have to keep clarifying what you orignally posted. It really is WONDERFUL news. Thanks for sharing it in this forum.
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Thanks for posting this important information on the impact of tamoxifen beyond the treatment period. I don't see the relevance of SusanK8's first post to this thread. Seems off topic.
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Love hearing any good news about Tamoxifen (especially since I'm on it
Don't really understand the relevance of the "Social Media" post?...however, I did find the "Tamoxifen: What Difference Does it Make" article interesting. I like to hear the absolute benefit vs. relative benefit..I think it helps put things into perspective and enables people to make a more informed choice. If I were to have severe SE's from Tamoxifen (or problems with blod clotting, uterine issues)...maybe I wouldn't beat myself up too bad if I had to stop ~ knowing that my absolute benefit is quite small. ~ or that 1 to 2 years of use may be just as good as 5 years?
I don't have any noticable SE's, have low risk of clotting issues and am getting ultrasounds of my uterus every 6 months ~ so I am continuing to take it. I'm making that choice with my eyes wide open. And I could totally understand if someone chose not to take it because there was such a low absolute benefit. Chemo, endocrine therapy, surgery, lemon juice (yeah, my mom told me that I need to drink a tablespoon of lemon juice every day to prevent BC) ...whatever you choose..I'm just glad we have more choices than we had 50 years ago.
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With all due respect SusanK8 does raise an excellent question...many patient advocacy groups (not just cancer) are "supported" by drug companies. I too wondered if the "results" were "placed" by a biotech/pharma/research company.
When I was diagnosed and treated at age 38, I stopped taking tamoxifen after only 4 months because I didn't like the side effects...that was 11 years ago. My oncologist provided the statistics and there was no stastical significance for pre menapousal women. (Apparently most tamoxifen studies are conducted on post menapousal women.)
Has anyone funded a study on those of use who chose not to take tamoxifen and have survived over ten years later?
My mom took tamoxifen for the prescribed five years and her cancer returned a few years later.
I always ask who funded the study and what are one's motives behind it. I'm glad SusanK8 is raising the (indirect) question: who is really behind the post about the study results...is it driven by industry?
For me, I believe, the thing that has provided me with continued great health is that I changed my diet, but that's a conversation for an entirely different post.
Best health to everyone!
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SuperMom, I'm happy for you that you're doing so well, for so long. Also, that you had a very small tumor, the least agressive grade, and no positive nodes.
I don't understand your suspicion of MOTC's post - she was sharing a link from Breast Cancer.org. Many people who use the discussion threads, don't read the rest of the website.
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huh? I don't work for anyone. Lordy.
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Revised my post. I meant to comment on the original post from Breast Cancer.org and whether it was "placed" through industry. Sorry member of the club.
Just wanted to remind everyone to keep asking questions.
p.s. The cancer was nearly Stage II and Grade II so the original team of doctors suggested I get a second if not a third opnion to the course of treatment and for that I'm truly grateful. It sent me down a different path...so to speak. (I thought IDC was "more serious" than DCIS but honestly I don't remember because it's been so long ago.
Anyway, hope everyone finds their peace as they continue this journey.
All the best!
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Well I am 51 and trying to move into post-menapouse (but my body apparently LOVES having periods).... and I was stage one with no lymph involvement and had a mastectomy and I am on Tami - and will stay on it.. My Onc gave me the statistics and discussed that fact they were portions of percentages... but I will do all I can to prevent this from coming back... I say thanks to Member for bringing it to our attention. That said, this is a discussion board and SusanK8 is raising the other side of the discussion.. All giving us food for thought.
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SusanK8
I don't know if you happened to see the posts about fair use, but it is a violation of the copyright laws to copy the entire content of a web posting without the express permission of the copyright holder.
Please just post one or two paragraphs from articles you wish to reference, and provide a link to the entire article for people who wish to review the entire content.
I did want to add - we don't need to do studies on women who chose not to take tamoxifen. Since the drug is a little over 20 years old, we only need to look at the statistics for women 20 years ago - the reason these hormonal drugs were developed was, as I recall, the concern of oncologists about the small but stubborn percentage of women who looked as though they were cured and who should have been cured, but who later had a recurrence or metastisis. Hence, the "Breast cancer is a bitch, and you can never say you are 100% sure you are cured" meme.
And I'm about as close as one can be, having been node negative, with a grade 1 tumor.
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I think it's great news. I have always understood absolute vs. relative benefit, and how it changes the numbers. However, to me - any decrease in recurrence is meaningful. To me - in my opinion, and case. I have no side effects from femara, so it is not a big deal for me to be on it. If I had horrible side effects I'm sure it would be difficult. However, it makes me frustrated when women chose not to take tamox or femara because they are afraid of side effects. I really believe most tolerate them very well.
Yes, sadly some women have recurrences even while taking tamox or femara.
There is also a difference in no recurrence vs. dying from breast cancer. Women live with recurrences and stage IV, but it is generally not easy, and with constant chemo. I am not necessarily thinking that femara will prevent me from dying of breast cancer - I am doing all I can to avoid any and all recurrences.
By the way my oncologist gave me both relative and absolute numbers - i.e. 50% reduction which means that in 100 women with your stats x amount had a recurrence. I really like the numbers broken down in that manner. It makes more sense to me!
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To me, relative percentage is highly meaningful, and no less meaningful than absolute percentages.
If I am told that a drug reduces the relative percentage of recurrance by 50%, I know that it cuts the risk, whatever it may be, in half.
If I'm told only that a drug reduces the absolute percentage by 7%, that tells me nothing unless I know the initial recurrance rate. So its probably less meaningful as to evaluating the impact of the drug than knowing the relative percentage. 7% might be curing everyone if only 7% recurr, or it might only be curing 1/10th of the patients, if 70% would have recurred without it.
So neither the relative or absolute percentage gives you the complete picture, without knowing the initial rate. Even a 0.1% absolute reduction could be an outstanding cure if the initial rate of occurance is only 0.1% of the population. So would we call absolute rates an exaggerated understatement? I don't think so. I would simply call either figure incomplete data.
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susan..i don't think the drug t would be administered to those without BC.
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Please understand that it is not my intent to upset the apple cart; however, we need to be informed and ask questions:
Direct quote from the article: "That the curves didn't converge suggested true prevention that 'potentially cures many patients,' Stephen K. Chia, MD, of the British Columbia Cancer Agency in Vancouver states.
Dr. Stephen K. Chia has a compensated consutlant/advisory role and receives research funding from Astra Zeneca...the manufacturers of Tamoxifen.
I can't put words in her mouth, but I believe that this is SusanK8's exact point about industry influence on clinical research and the published results.
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I think we understand the difference between the two stats. There's nothing deceptive going on here, we get it.
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The patent has been off tamoxifen for coming up on 10 years. If the industry wanted to promote a product, you'd think it would be a drug they make more money on (aromatase inhibitors), rather than its rival. A corrupt industry insider frequenting social media boards should be trying to bury the reputation of tamoxifen, not support it. Hmmmmmmm.
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Agree with Member of the Club in that I understand the difference in the stats.
I also have to say that I am so tired of hearning the naysayers as to the effectiveness of standard of care treatment.
It took me a while to catch on to what was happening, but really all about a Women's Studies agenda taken to an extreme. In this context, all "big pharma" is necessarily evil, and women are pawns in need of protection.
I find this belief highly insulting.
I believe that companies that invest huge sums in prolonging our lives are entitled to a return on their investment. I don't see this research being done otherwise.
I am beyond thrilled that we have antihormonals available, and that they are effective, particilarly among high risk women.
Finally, I believe that I am cured and that the anastrazole I take on a daily basis could well be the key to a long, productive, and healthy life.
Thanks again, Member of the Club for posting this. So nice to know how far we have come. - Claire
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THANK YOU, Claire.
I too am tired of reading about the cynical, almost paranoid suspicions. Tamoxifen has been generic for too long for ANYBODY to be making a profit on it. I am SO grateful for the research that has created the medications which are helping us to live longer, and healthier lives!
YOU Claire, are the INSPIRATION for all of us, to keep moving.
I don't like to have to come to Forums I want to read, and have individual posters on "Ignore" but it seems to be coming to that. Just tired of the cynicism.
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Dear Timothy,
So true that most posters here are informed and knowledgeable and that's terrific. However, I'm still amazed at how many people will read a headline or hear something on the news and not look any further in to what is being presented. And since the post was listed under the forum: complementary and holistic medicine and treatment... I thought I'd add a differing opinion.
I'm still dumb founded that 1 in 8 women in the U.S. experience breast cancer during her lifetime and the rate in China is far less. Need to look up my numbers but I remember vaguley that it was something like 1 in 100,000 in rural China (not Hong Kong). I'll leave that to all of you that did well in your stats classes.
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Claire - you are in inspiration! I agree - I feel that the constant "revelation" that there is a difference between relative and absolute risk is an insult - as if we can't figure that out on our own. It is not part of a sham by "big pharma". Big pharma doesn't scare me. Misinformation scares me. We all need to know our specific tumors and risks that they give us. Generalizations really don't help.
I will say that I had no idea of how many types of breast cancer exists, and I think we can all agree that there is much more about tumors that are unknown at this point.
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Thank you ladies!!!
I feel very "uninspired" today as getting my career back on track isn't moving. Or at least not anything visible. (Actually, one of my friends is helping, and she has the right connection at the place I am targeting as first choice.)
Plus, I am hoping we get more than two people attending the cycling club picnic tonight. At least my couscous salad with curry came out fine. An original creation, so was worried for a bit.
Supporting too a friend who is about to undergo surgery, and then a close friend of mine who is having more tests. At least, I no longer believe he could be at death's door.
Think I will be ready for my weekend cycling adventure of the Puget Sound area just south of the Canadian border. Very scenic, and very few hills. And my bashed ankle finally isn't hurting.
Now to get my butt over Green Lake and a three mile walk in before the cycling club shows. Should do wonders for my "inspiration level"
- Claire -
hay - I rode a bike today for the first time in ages (apple is a former biker with shot knees)... up and around the cul de sac.. about 6 blocks. riding my son's .... I can't even remember the chemobrainname of it.. but it is a GREAT light bike.
(oh, it's a TREK.. and my daughter has a Peugot.. where were those bikes when I was riding?)..
Uncle Richard buys them at garage sales and puts them on our deck. I guess we pay him in gardening tools (which always seem to be missing but end up at his place).
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Thanks MOC for posting this. And Claire--you're amazing. Glad your couscous turned out!
SuperMom, yeah, I've heard that BC rates in rural China are much lower than US (and that they are higher in Hong Kong, so it's a lifestyle factor; and when Asian women move to the US, the risk goes up in future generations). But I think the stats you're quoting aren't an apples-to-apples comparison. The 1:8 in a lifetime risk for women in the US. I can't find the comparable stat for women in China. But this source (if it's reliable) states that in China the breast cancer incidence is 18.7 per 100,000 while in the US it's 101.1 per 100,000. (roughly 1/5 the rate) For Chinese Americans, it's 55 per 100,000; for white Americans, it's 142 per 100,000. (roughly 1/3 the rate)
http://www.dnafiles.org/outreach/ethnic-media-fellows/new-york-breast-cancer-among-chinese-women
I also found this study from the UK which compares incidence and mortality rates. (scroll down, the first half of the page is rates in the UK; below it compares diff. countries). I haven't done independent research to know how reliable this website is but FYI.
http://info.cancerresearchuk.org/cancerstats/types/breast/incidence/
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Woah.
The "Accidental Amazon", and SusanK8 by reposting his/her words, is spreading some dangerous misinformation. S/he has missed one rather important little phrase from the data: "per woman-year." The tiny percentages s/he is reporting are actually PER YEAR, (not covering the entire 4 or 5 year time period as s/he interprets them to be.)
Unfortunately, they add up fast! One only needs to glance at the actual study to see that many, many, many more women then that have recurrences. For the very group that SusanK8, and the "accidental amazon" refer to...
"the women with ER+ cancers, with and without PR+ receptivity, including 44% who had node positive breast cancer, 56% who did not, and 51% who received chemotherapy."
46 percent of those who did NOT take tamoxifen had a recurrence of breast cancer within 15 years, compared with 33 percent who DID take tamoxifen. In that same group, 33 percent of those who did NOT take tamoxifen died of breast cancer within 15 years, compared to 24 percent who DID take tamoxifen.
So there is the absolute benefit of the drug, for that particular group. Out of every 100 women, 9 lives were saved (or 9 percent.)
I only wish that 90 percent of ER+ breast cancer patients would never have a recurrence even without tamoxifen (actually I wish 100 percent of all people with cancer never would.) The reality is not so pretty.
But, please, don't believe me. Go take a look at the study yourself.
accidentalamazon.com/LongtermTamoxifen_Lancet7-11
Just take a look at the charts in this study. Those are the absolute risk reductions...or as I like to think of them, the actual lives saved.
Even among the "good prognosis" group of node-negative, ER positive women...35 percent (35 percent!) had a recurrence of breast cancer within 15 years of diagnosis if they didn't take tamoxifen. If they did take it, only 19 percent had a recurrence (and true, some of those are locoregional or in the contralateral breast, but some are distant metastases).
Anyway, when it comes to tamoxifen, it is NOT small numbers we are talking about, or splitting hairs. The drug is really a literal lifesaver for many women with ER+ breast cancer (who are willing and able to take it.)
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Thanks Beeb - I was noticing the same graphs in the Lancet article - at 15 years the 46.2% recurrence in controls and 33.0% recurrence with tam (Figure 5). The difference gives a p<0.00001 which is very significant.
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Thanks for your reply Peggy. Been blogging about diet and disease in America for a few years now and realized I had a link to where I'd seen it:
China, Quidong country (standardized (ASR) rates of incidence (per 100,000) 11.2 vs. United States (white) 90.7 - International Agency for Research on Cancer (part of the World Health Organization). There's a graph as well:
http://globocan.iarc.fr/factsheets/cancers/breast.asp
Took a look at the links. Thanks!
As I mentioned on a previous post I feel that for me what has made the greatest impact on my continued good health is I changed my diet. I only eat very limited amounts of organic meat (no growth hormones or steroids) and no dairy. It's interesting. If one thinks tamoxifen is a big issue...I've seen some interesting reactions when I share that I also gave up cheese.
Best health always...
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