Stage 1, grade 1 and pre-menopausal
Comments
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My MO was speaking at my Cancer Transitions Seminar last night. He is 100% on the side of 10 years of Tamoxifen for people like me. Which I don't mind at all.
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Belinda...Could you be more specific with regard to what your physician said. I won't be meeting with mine until next month. I have a complete copy of the study and have read it. The takeaway message I got from when the study was published was that now patients would have a choice...especially those whose risk of recurrence was greater. When I was diagnosed in 2010, my physician said 5 years of Tamoxifen was the standard of care and that I should CONSIDER 5 years of an AI. So he was preparing me to consider 10 years of endocrine therapy. I'm wondering if the Atlas study will lead to a "blanket" recommendation of 10 years.....
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BTW....the 2012 professional version of the NCCN guidelines discusses all of the different endocrine studies on pages 92-100. There's a number of ongoing studies....Hopefully in the next few years we'll have more data.
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34 yrs, BRCA negative. I had BMX last week. My path report came in today.
ER+ 100%, PR+ 100%, her2 negative. Grade 1, mitotic 1, Stage 2a as size came back at 2.5cm. Half tumor was IDC other half was papillary which is extremely slow grade. 3 sentinal nodes removed all negative. Other breast was normal. Based on this surgeon said no radiation. Waiting for onco type. Based on ki67 which was 10% and grade 1 my team thinks oncotype may come low and possibly no chemo. But will confirm once onco type are finalized. I will be only on Tamoxifen.
Have a young child and want to be around for her. So went in for an aggressive bilateral surgery despite my surgeons' recommendation of needing only Unilateral max as the papillary extension was near my nipple.
I feel happy but confused if my surgery and hormone therapy is all I need? Has anyone been in similar situation?0 -
Thanks to Annicemd and others who chimed in on my questions. So, can I expect that tamoxifen will not interfere with my body's schedule to go into menopause, and that I will know when I go into menopause (well, as best as one can do, since it's not necessarily clear cut)?
I could be in that same situation bhlri, and think I'd feel all those things you listed if I don't need any treatment, except for hormone therapy.
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Thanks ReneeinOH. Glad to know some one else may be in my situation. Will look out for your final treatment. My best wishes for your surgery. XOXO
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My MO explained that the study indicated 5 more years of tamoxifen (I am premenopausal) decreases the risk of reccurence. This doc can quote any study..he is a amazing and is very evidence based with his approach. Also teaches at John Hopkins.
bhlri my tumor was 1.5cm and have similar stats. My mitotic might have been a little higher. He thought my oncotype would be pretty low. However, it ended up being 19. Did have radiation (had partial mastectomy) and no chemo. Chemo doesn't work well on slow growing tumors. I am 99% ER/PR positive. So the Tamoxifen is the key for me. Glad it's a choice for us. He always tells me...tamoxifen is more beneficial for me than a chemo would be.
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Renee you are correct tamox will not interfere with true menopause and menopause will be evident from symptoms and easily confirmed on blood tests
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I recently spoke to the top breast oncologist from the Royal Marsden Hospital in the UK and his interpretation of the data so far is that 10 years of tamoxifen is likely to be optimal treatment for ER +. He said there would be clear evidence once I get to 5 years which will be 2016! He also felt that tamox for grade 1 stage 1 is more important at preventing recurrence that any other treatment!
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Thanks for the clarification Annicemd.
When I saw my BS, he said 10 years of tamoxifen, and afterward his nurse practioner said something to the effect: I guess 10 years is the new standard; that's what is going to be recommended from now on.
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Annice, my MO told me up front that we would wait to see the evolving data and decide as I approached each milestone. I worry with a slow growing disease about late recurrence. My gut tells me as long as I can tolerate Tamoxifen, I should expect to stay the course for 10 years. That is, unless my uterus revolts. I wonder if afterwards, as more research unfolds, if we will be encouraged to do endocrine therapy beyond 10 years... I am slowly preparing my psyche...
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VR, I agree, although its a crap shoot and an unpredictable course, I worry more about my lazy tumour returning much later rather than sooner, although my brilliant London oncologists iterates that recurrence risk is very, very low! I feel fortunate that by the time 5 years tamox is up we will have lots more information about optimal duration of tamox, tamox/AI combinations as well as the SOFT results. The new data will also have information on risks and side effects of the longer treatment regimens...
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Annice...I agree wholeheartedly that our likelihood of living a very long life is favorable with our diagnosis. However, as I read all of the unfolding data, my ONLY regret and concern is that I believe we are going to be oncology patients FOREVER! Believe me, I don't mind that! In fact, I grow happier at each doctor appointment as they begin to tell me to push out my next appointment to a later time frame! Nothing could make me more optimistic than one of my oncology physicians telling me, " See ya in a year!" Early on, when I was first diagnosed, as I meandered my way through the hospital looking for each of the specialty oncology departments, I found it difficult to even gaze my eyes on the word "oncology." My stomach would churn. I've grown. My psyche has healed. But my heart still hurts now when I see the word "oncology" because I think about all of the sisters I've met on this journey who are no longer here. Because of them, as long as I'm an oncology patient, despite being healthy, I don't think my heart will ever completely heal...
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The discussion is interesting. I was diagnosed and treated over 10 years ago. Now, in wealthier countries most bc patients are automatically treated with the recommended protocols, so it is harder to get a true picture of what the outcome would be without it.
I can only post my own situation as a contrast. I can't even say for certain what the basis for my results has been. My personal opinion is that for some if not all bc patients, bc likely has some metabolic basis that has yet to be completely understood and utilized to best advantage. One aspect that is becoming very obvious and yet has not been analyzed and compared very well with present standard protocols in terms of numbers for newly diagnosed patients to consider when making treatment choices are the elements of weight gain, including post-treatment postmenopausal weight gain and its risk value. In reading the OP, I feel it raises the question of just what differences there are in terms of risk between those who are premeno and those who are postmeno and the differences in responses to treatment.
So I post my history for others to consider. I just wish there was some kind of factual "table" for comparison to use, to compare outcomes based on proper weight maintenance, in choosing as well as discarding various therapies. It is much harder to distinguish what works without extensive treatment and what doesn't, now that so many early stage patients are treated preventatively so much more extensively.
A.A.
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Actually, A.A, if you read the Atlas Study it compares patients who stopped taking Tamoxifen at 5 years, vs those who continued to take it for 10 years. So you do get an EXCELLENT idea of at what point in time there became a MEASURABLE DIFFERENCE between the two groups. At the 7 year mark there started to be a difference and the difference between the groups became statistically significant in year 12. That is 7 years after the group completed the Tamoxifen and two years following the group who took tamoxifen for the ten full years.
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Hello VR,
Yes. Thanks but what I am asking is for a comparison table for newly diagnosed patients to be able to compare the outcomes based on metabolic analysis. For example, how well do premenopausal patients do vs postmenopausal patients vs post-treatment menopausal patients when their metabolic status is noted, followed, and considered? What is the value of treatment for each patient based on recommended weight maintenance, for example?
I would like definitive study analyzing whether or not for some patients the value of metabolically analyzing and treating is equal to or better than the various extensive treatments used at present.
A.A.
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A.A. I think you need to read the Atlas Study if you haven't already. You initially mention that in wealthier countries patients follow the protocol so it would be difficult to measure how well patients who don't follow the protocol compare to those who do. Then you ask how does metabolism and/ or weight play into the statistics? And further question pre and post menopausal differences.
Most of the answers to your questions can be found in the study. In fact, I am very impressed by how everything is broken down. The study is very descriptive of all of its participants. Read the study if you haven't.0 -
One more point... IMHO, in the near future, once we begin embracing genomics, we will no longer need such long, descriptive and expensive studies. Using genomics we will be able to better judge each patient's individual risk and benefit. One day soon, just like we know now with the Oncotype DX test which patients can forgo chemo, we will know who needs more or less endocrine therapy. I highly recommend reading Eric Topol, MD's book, The Creative Destruction of Medicine.
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VR,
Extended tamoxifen with outcome is documented by the study, which is helpful if one is interested specifically in duration of tamoxifen use.
I don't see how the study provides comparison information about the results of any metabolic management.
http://www.ctsu.ox.ac.uk/research/mega-trials/atlas/atlas-protocol
"To encourage wide participation, the Atlas study involves virtually no extra work for collaborators, so that even the busiest clinicians can take part.
The entry procedure is quick and easy, no examinations are required beyond those given as part of routine care, and minimal, annual follow-up information is requested."
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Read the study. It is VERY descriptive!
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VR, I couldn't find any publicity about any portion of the study offering any metabolic analysis and comparisons done through the study such as weight management, for example.
http://www.nytimes.com/2012/12/06/health/extended-use-of-breast-cancer-drug-suggested.html?_r=0
"Mr. Peto said he thought the results of the Atlas study would “apply to endocrine therapy in general,” meaning that 10 years of an aromatase inhibitor would be better than five years. Other doctors were not so sure.
The Atlas study was paid for by various organizations including the United States Army, the British government and AstraZeneca, which makes the brand-name version of tamoxifen."
Tamoxifen may in fact turn out to be the best answer, if for example, a majority of patients prefer the ease and simplicity of taking a synthetic substance rather than engaging in metabolic management such as weight loss. But that choice should be made clearer to patients, so that they know what works, not just offered one solution by failing to document a comparison.
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A.A. You need to read the journal that it was published in. A.A., I think we can both agree that to conduct a long term study requires a lot of time, work and money. Often, after a study is completed, that is, IF it is completed ( often studies close because they can't find enough participants) researchers and clinicians look at the limitations of the studies as well as biases. I appreciate your concern regarding metabolism as we have had numerous discussions about it in the past. My point regarding Atlas is that it has given us lots of information. And my greater point is that one day soon, gathering all of this info, including metabolic info including weight may be unnecessary as we embrace genomics. For example, I have no risk factors to develop breast cancer besides being a woman and being over 50. My older sister is obese and look who got the breast cancer! If you read Dr. Topol's book, you will discover how genomics will be taking clinical trials to a new playing field. One day, through genetics, we will be able to know precisely who is at greater risk of developing diseases and screen those individuals more appropriately, rather than how we screen now which leads to unnecessary over diagnosis and treatment. Treatments will also be based on genetics. We already know that using genetics we can identify patients whose metabolisms do not respond well to certain meds, think Plavix, the platlet drug that patients are prescribed following cardiac stents. Or think of targeted drugs like Herceptin. Or think of the Oncotype DX test.
Read Dr. Topol's book and enlighten yourself about the rapid changes under way. I was speaking about this issue this week with my breast surgeon. He mentioned how "stunning" genetics is becoming so important in medicine. A decade ago it was difficult to find enough students to devote themselves to genetics. Not anymore. And with technology and Moore's Law, if you read The New York Times this week, you will see physicians turning to genetics FIRST in trying to uncover patients' illnesses. What does this mean to you and me? It means we will one day soon use genetics to discover our risk, our diagnosis and our treatments....0 -
VR, genetics and epigenetics are fascinating and, even in the not-too-distant future, could play a major role in treatment of cancers, as long as the homework is also being done to demonstrate what the choices are for successfully treating them. The study demonstrated that tamoxifen is one choice that has some success, and more success if taken longer. But it does not demonstrate that the homework has been done to show whether or not metabolic management through other interventions is less good, as good, better than, or better in combination with tamoxifen.
A.A.
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A.A. I undoubtedly agree with you and share your frustration. However, before we get to where Dr. Topol says we're going, the info from Atlas is extensive AND valuable. We can only improve upon it. And the way it's going to be improved upon is through genetics.
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Mnmom I have very similar stats to you, 18mm tumor, .6mm micromet, grade 1, mitotic rate 1, total grade score 4/9. I thought, and my surgeon thought, I wouldn't need chemo, but I had a ki67 test done which came back at 18% which is the reason I'm getting AC. I'm actually going to get a second opinion this week about adding a taxol, based on my rudimentary research and cancermath.com giving me another 5% chance of being alive in 15 years of we add a taxol. The second opinion is in two days, I'll let you know how I get on.
Once I found out about the node micromet, I wanted chemo too. I know how you feel.
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Hi AA, interesting thoughts you have brought to the thread. As far as I a m aware there is very well established evidence from historic studies that metabolic management, weight management etc is associated with improved prognosis. Weight gain and elevated body mass index is a negative prognostic factor. Ongoing studies do not therefore focus on this because that aspect of evidence is established. However metabolic factors alone do not account for all recurrences of BC.
For early stage BC the prognosis is particularly good. Without any treatment upto 80-90% of women will not experience a recurrence without any adjuvant treatment. The problem is that we don't fully understand why the 10-20 % experience recurrence. This is made more difficuly by the fact that recurrence after early stage BC is often late - not infrequently 10-20 years later....Nonetheless as early stagers we have choices and a choice to use healthy lifestyle and not hormone therapy if outcome stats are excellent anyway is reasonable. Certainly these days many of us are not offered chemox but would have been offered this a few years back and it is possible that in a few years we will know more about which of us will actually not benefit from any adjuvant treatment.
Currently however to use a more comprehensive treatment approach, assuming that you may be one of the unfortunate minority that may be at risk of recurrence, is also very reasonable. For ER+ BC the data for tamoxifen is spectacular. I personally worked on a breast cancer ward as an intern in 1993 when tamoxifen was not widely available yet and saw many sisters who did not have the liberty of choice. As I now 'wear their bra' so to speak, I think of them every day and I take my tamoxifen happily, exercise regularly, eat healthily, keep my weight down, take vitamin D and mineral supplements, and aim to watch my children grow up! I respect your management choice but I think most women would want to follow the lifestyle and metabolic as well as any other edge they can utilise to reduce recurrence risk
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annicemd,
Thank you for your thoughtful response.
Other than having some reservations about the use of tamoxifen for HER2 positive patients in consideration of the conflicting information about that use, I don't disagree with you at all when it comes to choosing between tamoxifen use and metabolic management alone for those who are not recommended to have chemotherapy in addition.
I am only 10+ years out and am one of those HR+'s who is certainly at risk for late recurrence while still being in the pool of the 80-90% who likely will never recur, with risk increased by being HER2+++ yet not affected negatively by the lack of trastuzumab or the lack of 7 3/4 years of tamoxifen or other anti-hormonals.
My question is this. What is being done to provide any of us with statistical comparisons to use in choosing between metabolic management such as weight loss or such things as the addition of vitamin D, so that we know where the most intelligent choices lie, rather than taking treatments that are useless for some of us when used in addition to metabolic management? How much benefit do we get from vitamin D use in comparison to tamoxifen use, particularly if we are among those at least risk?
For those who happen to be with cancer like mine and do not have any way of knowing it, and newly diagnosed, hormonally unlikely to benefit from chemo at all, yet with no benefit from trastuzumab and no need to take tamoxifen for more than 1 3/4 years, how much does metabolic management make a difference?
Even as a matter of preventive medicine for bc, the question of quantifying the value of metabolic management to me is important so that as patients we more fully comprehend just how important of a choice that actually may be. I see many bc patients who are truly tortured by the impression they are not "doing enough" because they happen to be in a group that is not offered more intensive chemical treatment, yet there is still only casual, vague emphasis on the likely value of metabolic management for them, with general silence as to the harmful aspects of more intensive chemical treatment.
Metabolic management is not easy, particularly in dealing with the menopausal slowdown of metabolism that occurs with other treatments. To me, a woman who maintained proper weight to age 50+, what sense was there in bringing on menopause with drugs to protect me from breast cancer, and then subject me to much higher risk due to the metabolic result of weight gain that was next to impossible to avoid?
I read the posts of women like me (but who are newly diagnosed) and who have also maintained proper weight throughout their lives and who are so optimistic that they will continue to be able to do that post-treatment, with no genuine comprehension of how difficult that actually becomes once one has done the treatment and become menopausal. They are NEVER offered the chance to consider that aspect of benefit vs risk, and have no metabolic management statistics to help them make their choice about it.
I don't think we should throw out the tamoxifen. But I do just think we are missing that boat -- the opportunity for women to know what they are choosing, rather than acting irrationally out of fear.
A.A.
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http://www.imedicalapps.com/2012/08/creative-force-eric-topol-book-review/
AA....above is a terrific link of a review of Dr. Topol's book, written by an oncologist. Please take a moment to read the entire review. It's THREE pages long. If you read the article, you will begin to understand that the type of clinical research that you are asking for is part of the "old" and sadly, IMHO current establishment which, as I said earlier is costly and too time consuming and might still not give us the answers we are looking for. Furthermore, as I mentioned earlier, realize that attracting patients to prospective trials is often not met and leads to many potentially good trials not being realized. And, you are correct....many patients today are NOT realistic when choosing a therapy when they are driven by fear. That's where a GREAT oncologist comes into play. My oncologist was very forthcoming in terms of my risks and benefits and what therapies he thought I should consider persuing. I think I made a balanced decision based on whatever evidence there was despite being flawed.
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VR, we are sometimes on the same page and sometimes not... so help me out here. I comprehend from the article that we would be have the information to know in advance which health problem any given individual was susceptible to, although not certain to ever be problematic for that individual.... But I'm not clear as to the methods that would be used to come up with the treatment unless the treatment for every individual's characteristics had been developed and tested by some other unnamed method beforehand. I get the impression that genomics indicate which existing treatments would be useless for that person based on genomics, and which existing treatments would work, but I don't see anything about it that would help to create new treatments for conditions that don't have any reliable treatments. So.... I don't understand exactly how we would identify new treatments specific to the individual even though we know their individual genomic fingerprint (or whatever it is called).
???
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AA... I am glad you took the time to read the article. What wasn't discussed in the article but is discussed in Topol's book concerns targeted therapies such as Herceptin for HER 2 Positive tumors. What Topol believes is that we can develop more treatments like Herceptin without having to do long drawn out studies. I will post another blurb of his explaining how they will come up with new treatments. But the book is worth reading to understand in depth how he envisions medicine in the future.
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