Stage 1, grade 1 and pre-menopausal
Comments
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There you go! Thanks Annice! I just learned something!
Tomorrow I am supposed to begin an AI..... Hmmmmm...0 -
Pooh612-- it's interesting that you note that about fertility surge. Lupron is used as a fertility drug precisely for that reason. I didn't know this but one day I was Googling (to find relief for my hot flashes) and realized that Lupron WAS PRESCRIBED TO WOMEN TRYING TO CONCEIVE.
Annicemd -- just to hear a medical Professional say they are trying to tune in to QOL issues, makes my day. It's kind of a good problem to have, isn't it, so many young survivors for whom QOL and not just staying alive is an issue
Violet_1 :-D I was 3-1/2 years to stage IV. May not seem long but I divorced and moved halfway across the US, twice. Recurrence isn't the worst thing I've faced. I feel like one of my life's missions is to let early stage gals know that recurrence isn't a death sentence! Thanks for your kind words!0 -
TarheelMichelle, I'm less convinced that QOL has registered to any significant degree yet. Lots of lip service so far. If QOL is ever actually considered important to those who practice oncology, all they would have to do is pretty simple.... They would have to add a specialist like an endocrinologist to the grand poobah committee that supposedly considers our options and comes up with a recommendation. They would have actually bend enough to give EQUAL authority on the tumor board to that kind of a specialist. Then in addition it would have to be considered normal protocol to have a complete endocrinologic analysis at time of diagnosis, just like we get our surgical analysis or our radiologic analysis or our oncologic analysis... instead of cookie cutter endocrine treatment without any thorough endocrine analysis along the line or even at the end of treatment. Maybe then there would be better understanding of the degree to which the thyroid issues are related to bc, or the degree to which the pancreas is affected by chemotherapy, etc. etc. Until they have that kind of comprehension and respect for the mechanisms of the endocrine system in regard to cancer and cancer treatments, QOL will remain "on the back shelf".
A.A.
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AA it is a struggle to get the medical profession in general to tune into quality of life issues whether they be in relation to cancer survivors, menopausal women without BC, other hormone related issues such as thyroid issues or people with many other causes of complex medical fatigue and chronic fatigue. I agree endocrinology input is required but these issues often need more thorough input than diagnostic tests alone and most endocrinologists stop after the diagnostic test stage!
There are a lot of quality of life issues out there and very few medical specialists who know how to approach these issues effectively and efficiently. If medical specialists know who to refer their patients to, for this type of expert opinion, then they tend to do so.
My clinical practice is swamped because my medical colleagues recognise that these issues are important and refer their patients to me. But i have 20 years of clinical medical training and research with several years of specialising in quality of life in the context of complex fatigue, womens health and cancer survivors. Although I am not unique there are not that many similar specialists around. It would be helpful if I could clone my practice
I am looking at ways to spead the word and mobile technology might help this going forward, but it all takes time 0 -
Annice, how do you help women with QOL issues? That make be asking way to general of a question, but I'm curious to know what kind of approaches one can take.
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Renee I wish the answer was easy enough to put in a few sentences. There are multiple factors that contribute to quality of life, for example overall level of physical health/burdon of organic disease, fatigue level, sleep quality, anxiety/levels levels, nutrition, body mass index, physical fitness, pain and other physical symptoms, hormone deficiencies, other medical diseases, drug side effects, alcohol, smoking, the list goes on and every individual is different in their coping strategies and how their overall health and well being is affected by all these different factors. A thorough assessment of what factors are contributing to problems with quality of life for each individual can unravel the key issues and lead to identification of the necessary interventions to help. These can range from simple things like vitamin D and other vitamin and mineral supplements through sleep management, to specific treatment for hot flashes, urogenital symptoms and diagnosing other medical issues. Lifestyle management including relaxation, stress management and using mindfulness techniques are often very effective to improve quality of life but there is not one size fits all
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annicemd,
(Long post...)
When I was diagnosed in 2002, like most patients probably I just thought that there was more communication between medical specialties that are commonly accessed, and after I was treated and experienced the slow metabolism and loss of gender, I discovered there was little shared knowledge among them about these issues. Some major cancer centers have begun to provide some post-treatment support. Sadly, the principle of genuine informed patient consent at time of diagnosis about these SE's is still not standard practice--even at some major cancer centers--more than 10 years after I was diagnosed.
I see very few oncology nurses who are of menopausal age, and of those few who are, there is almost no willingness to accept the concept that the differences in level of gender or libido exist for cancer patients beyond the level of "difficulty with adequate lubrication" or "body self-image" issues, because that is all they are taught to address.
I saw the cancer center dietitian, who was knowledgeable about nutrition for cancer patients pre and during treatment, but whose dietary advice for a postmenopausal breast cancer patient was not relevant. The tool used to calculate my daily metabolic requirements if all I did in life was to breathe produced a recommended caloric level that was double the caloric level that would produce no weight gain for me with daily exercise.
My own experience in seeking help for the slowing metabolism definitely demonstrated your point. In a city the size of Seattle, after trying for appointments with many endocrinologists and being turned down because I did not have thyroid or diabetic problems or pancreatic problems -- the common fare that endocrinologists deal with I guess -- one endocrinologist very reluctantly agreed to see me. I agree with you. Endocrinologists are booked solid just dealing with other endocrine problems, and in addition, tend to see cancer as being completely under control of the oncologist, who is not familiar with or even terribly interested in endocrinology. But I do have the metabolic problem of drastically slowed metabolism, so what other specialist would there be for me to see for help?
My impression is that until there are more specialists like endocrinologists who are practicing AND integrated into the standard analysis and recommendation process of "the tumor boards" for cancer patients, QOL for cancer patients will be last on the list to be adequately addressed, if ever. I don't think it will happen soon.
Although I too like the idea that medicine would be improved by something more exact and similar to what is being proposed by those such as Topol -- by genetic analysis -- I am puzzled as to how identification of my genetic make-up results in an instant match for the perfect pre-existing cure for me (as if there is a box of cures already discovered, known, and mixed and ready on the shelf tagged to match each person's genetic make-up and any disrupted aspects of it -- including whatever epigentic make-up I happen to have). I grasp the importance of using our individual genetic characterics as the basis for new way of choosing the perfect treatment, but just where these perfectly matched, always successful pre-existing treatments that cannot conflict with any of the rest of the genetic make-up one has, are going to come from, I don't understand. I do understand that Topol has decided they will not be found through the present clinical trial system, but I don't understand just where they will come from instead. So that is where I wonder how that proposal would work.
A.A.
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annicemd:
I am 47 and went of the BC pill Loestrin 20 Fe about 3 weeks ago (cuz of the Breast Cancer). I haven't had a period yet--am surprised since when I temporarily went off it about 7 months ago for 3 months, it came back almost immediately & just as hideous cramps/bad/clotty as ever (I also have fibroids)! So, maybe my body is just adjusting?...I'm SURE I'll be getting my nasty periods back SOON! I don't think I'm in menopause at all.
BUT, since I went off the BC pill this time, I have MAJOR body temperature regulation issues. I get flushed/hot, then immediately cold. I normally am ALWAYS-ALWAYS cold. The only "menopause" type symptoms I've had for sev. years is night sweats, but I'm almost positive they are from taking Lexapro, as they only started years ago when I began taking Celexa, then Lexapro.
Just thought I'd run this info. by you since you are an endo. THANKS! Anyone else, feel free to chime in!
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Wow, very insightful Annice and AA.
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AA I agree with you, the problem is often inadequacy and lack of knowledge from healthcare professionals and even within endocrinology there is supra specialisation and levels of expertise vary. For metabolism issues a medical weight management endocrinologist would be most helpful, dieticians often do the "your eating great" line when that is clearly unhelpful and not the issue!
Dr Topol is not just looking at genetic analysis, he is promoting use of the digital technology revolution to help advance and individualise healthcare in many diverse ways and I believe this will lead to a paradigm shift in the way healthcare is delivered by individualising treatment rather than trying to teat everyone the same because of course we are not al the same0 -
Violet you are probably peri menopausal but that can go on for a long time, I suspect your MO will want to measure your hormone levels to test where you are as this may influence your adjuvant treatment
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Thanks once again, annicemd, for your perspective and explanation.
Newer and available technology I think is appealing and seems more applicable to urban people who are used to spending a much, much higher percentage of their time interacting with various devices, including just for keeping them constantly upgraded and connected. (I live with a technogeek myself, or I wouldn't be here to the extent that I am.)
I'm more of a skeptic about it being useful on a reliable basis, but then I happen to live in a part of the world (like a great deal of the rest of the real world outside urban areas) where being dependent upon whether or not communication and function by such devices is reasonably reliable is to some degree quite literally dangerous to one's health.
When in more urban areas I have watched those who are accustomed to having rapid access to the devices fumble with them when they don't function as well as they would like or as well as they should, and who then wait impatiently for a live human technician to address the problem. Such simple things as local natural disasters and power outages can leave people suddenly unable to collect and interpret or share the medical data, with little in place for backup.
You aren't responsible for knowing everything about it, and I like your enthusiasm for developing what is useful about it. But I still wonder how all the expensive changeover to the devices for collecting and interpreting all that data will connect with the practical application of being able to find and apply the complex individual cures required. I just haven't heard anyone explain that end of it.
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Question to anyone ........re :ZIPP Trial .
I am still trying to figure out if adding Zoladex is an overkill .....i keep coming back to the Zipp trial and this article found
here
http://www.breastcancer.org/research-news/20090226
SAYS
More than 2,700 women diagnosed with hormone-receptor-positive breast cancer participated in the ZIPP (Zoladex In Premenopausal Patients) trial. After surgery and other treatments, the women got 1 of 4 treatment approaches to reduce the risk of breast cancer recurrence:
- tamoxifen alone for 2 years
- Zoladex alone for 2 years
- tamoxifen and Zoladex in combination for 2 years
- no additional treatment
The women were followed for more than 10 years. The results:
Tamoxifen and Zoladex worked about the same to lower the risk of breast cancer coming and improve survival. Compared to women who didn't get either medicine, the risk of breast cancer coming back was 33% lower for women who got 2 years of Zoladex and 29% lower for women who got 2 years of tamoxifen. The difference in recurrence risk reduction between the two medicines wasn't significant, which means it could have been due to chance.
There was no difference in the risk of breast cancer coming back between women who got BOTH tamoxifen and Zoladex and women who got ONLY tamoxifen or ONLY Zoladex. This finding is important because doctors often recommend the medicines be used together to reduce the risk of recurrence.
________________________________________
So my question is why do both ...I keep thinking that i need estrogen to function and to maintain a certain quality of life and from what i see on the discussion boards most premenopausal women in the United States with early stage breast cancer who have low Onco scores get prescribed Tamoxifen only......so i remain confused as to what the treatment should be ???? Is zoladex not covered by insurance in the US ....Would that be the reason ? (I am from Canada and waiting for my onco score ).
Cheers
( sorry i just keep finding more information that goes against the whole zoladex/ tamox combo treatment plan ....and am trying to figure out what the benefit is and why this combo is not routinely offered in the U.S to the premenopausal group ).
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This has been such a good thread, thank you everyone. I have been on DIM 10 days (300 mg) and I feel great and i am someone who does not normally do well on any kind of meds so not only am i not having any SE from DIM but i actually feel noticeably better. I normally walk around feeling really cold and one thing I notice is that my body feels nice and warm. I also started vitamin D yesterday. My oncotypedx dx score was 15 (9% risk of recurrence with Tamoxifen). I have pretty much decided against Tamoxifen. I still am confused about Tamoxifen and distant mets. I had a bmx so am not that worried about a local recurrence. I know it is well documented that Tamoxifen helps stage 4 in stopping further mets. If I was a higher stage I would take it. But I can't justify the risks and sacrificing QOL when I keep reading that it prevents recurrence and in my mind that means local because they don't mention distant mets. Can someone clarify that for me. It also seems when I read someone didn't take tamoxifen and got a recurrence that they did not have bmx. My tumor was .9 mm, grade 1, Node negative. I have several people near me wanting me to take the dang drug but they don't realize the hours I have spent trying to find proof that the gain outweighs the risk for my specific situation, given my extreme sensitivity to meds, I haven't. Especially now when I feel so fantastic 6 weeks post bmx, I don't want to take a drug that has the potential to take me down a slide to feeling awful for the possibility of MAYBE getting a reduced risk of recurrence. After all people on Tamoxifen get recurrences also. I am sticking with the DIM for now. Everything in me tells me not to take Tamoxifen, as if my body is warning me in advance it would be a real bad road for me to go down. God has been with me on this journey...my Pilot has not made me feel I am making a wrong choice in refusing Tamoxifen. In fact I am at real peace with it....if only those around me would understand this is not a decision I made lightly.
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mepic,
I think "recurrence" of breast cancer can be interpreted in more than one way.
Recurrence sometimes is used to refer to someone who has already been diagnosed with a general type of cancer (such as "breast cancer") once and that cancer is treated, and then that person is diagnosed with it again at some later point in time (regardless of whether the 2nd occurrence of cancer is local again or mets).
A slightly different interpretation would be when distinguishing whether the return of cancer is considered upon analysis to have the same characteristics as the original cancer (recurrence), versus being diagnosed the second time with a cancer that has different characteristics from the original cancer that was diagnosed.
I understand your struggle in trying to make an informed decision about tamoxifen as a very early stage bc patient.
I personally suspect (but do not know for certain) that I benefitted from short-term use of tamoxifen. However, there are legitimate concerns about the use of it that have been raised.
Excerpt from Up-to-Date discussion of patients with mets:
http://www.uptodate.com/contents/treatment-of-metastatic-breast-cancer-beyond-the-basics
"Most individuals with ER and/or PR-positive breast cancer will respond to tamoxifen therapy. However, some do not respond at all to tamoxifen. Others originally respond to tamoxifen but later become resistant. Unfortunately, most if not all breast cancers eventually stop responding to tamoxifen."
(I read that, and I still am not certain whether it refers only to patients with mets or whether it refers to all bc patients, although the article itself is about patients with mets.)
2009 excerpt from universityassociatesseminar.com
"A report in Breast Cancer Research attempted to explain, at least partially, why some breast cancer patients have a higher incidence of recurrence of breast cancer than others. In particular, metastatic breast cancer appears in a subset of patients treated with tamoxifen, and this has raised the question of whether the tamoxifen treatment could simultaneously reduce the primary breast cancer but facilitate cancer invasiveness and eventually cancer cell dissemination throughout the body."
Maybe someone else has more info pro or con, to consider. However, it sounds like you are at peace with not taking it, yet remain troubled by the preference of people who mean something to you. I cannot tell you how to resolve that difference, and am sorry that it troubles you.
A.A.
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Mepic....You keep referring to the OncotypeDX score of 15 that you received and you mention that the report says you have a "9% chance of recurrence." Do you have a copy of the report? On page one of mine, under the fourth heading, CLINICAL EXPERIENCE: PROGNOSIS FOR NODE NEGATIVE,ER-POSITIVE PATIENTS ...My report explains, "The Clinical Validation study included female patients with Stage I or II, Node Negative, ER-Positive breast cancer treated with 5 years of tamoxifen. These patients who had a Recurrence Score of 15 had an Average Rate of Distant Recurrence of 10% (95% CI: 7%-12).
Now, I don't wish to be argumentative, but I wish to clarify this important point for anyone else who reads this thread and believes what you are saying, that from what you are reading, you understand the information you are gathering means that Tamoxifen does NOT prevent future mets for early stagers while only preventing local recurrence and for Stage IV patients it stops further mets. Now recall what I told you earlier. The OncotypeDX score gives you TWO bits of information. The first is whether or not you could benefit from chemotherapy. And the second states it right there on the first page in the fourth heading on the OncotypeDX report....Your recurrence score SPECIFICALLY TELLS YOU WHAT YOUR CHANCES OF DISTANT RECURRENCE ARE IF YOU TAKE TAMOXIFEN. "Distant Recurrence" means metastasis. Haven't we already clarified this detail more than once?
Now whether or not you choose to take Tamoxifen, is your right. But let's not be wrong in assuming that for early stage patients Tamoxifen does NOT prevent mets. That is just plain WRONG. And the NCCN guidelines also make it clear in their recommendations. For patients with ER-POSITVE tumors that are greater than .5cm, they "recommend" endocrine therapy. For patients with ER-POSITVE tumors that are smaller, they say that patients should "consider" endocrine therapy. The level of evidence that they base those recommendations are of the highest level. So let's be very clear about that.
Now, regarding Tamoxifen resistance. Yes, sadly there are still too many ER-POSITIVE patients who do endocrine therapy and eventually have DISTANT RECURRENCES (mets). Fully 30% of NODE NEGATIVE ER-POSITIVE Stage 1 thru Stage 3 patients will one day have a recurrence, despite endocrine therapy. For sure, researchers are getting closer every day at explaining why that occurs. But make NO MISTAKE ABOUT IT, since Tamoxifen and the AI's have been used on early stage patients, many lives have been saved. And that, MEPIC is VERY WELL DOCUMENTED. Whether you've had a mastectomy or lumpectomy, mortality rates have improved thanks to endocrine therapy.
Now, regarding QOL. Without a doubt, one must consider the risks and benefits, as well as side effects of taking a medication. With respect to QOL, if you believe your QOL will be diminished from taking a medication, then that is YOUR decision and NOBODY ELSE'S and should be respected.
Now recall that we discussed your discussion with the Genomics Health rep and she couldn't give you an absolute number with regard to your risk of DISTANT RECURRENCE (metastasis) if you chose NOT to take Tamoxifen. Now, keeping in mind that your OncotypeDX score is measuring your chances of DISTANT RECURRENCE (metastasis) based on taking TAMOXIFEN, if you choose NOT to take it, based on your score, you will NO LONGER BE AT LOW RISK OF RECURRENCE despite having a small tumor that is Grade 1. That is why the NCCN guidelines are very clear in their "recommendation" of taking Tamoxifen for tumors that are greater than .5 cm. They believe the benefit of taking Tamoxifen outweighs the risk of DISTANT RECURRENCE (metastasis). And with the recently published Atlas study, it is now even more well documented that Tamoxifen prevents DISTANT RECURRENCES (metastasis) and saves even more lives.
The $64 question remains which of us does best? That question can't be answered right now...but it appears that one day soon we will know. Until then, the good news is that us Early Stagers with Grade 1 tumors have more choices. No one is right or wrong when it comes to making a decision what's best for them. But again, I wish to drive home the point to anyone who might be reading this thread, Tamoxifen and AI's REDUCE THE CHANCES OF DISTANT RECURRENCE ( METASTASIS ) and IMPROVES THE CHANCES OF SURVIVAL. THAT'S A FACT THAT IS WELL DOCUMENTED.
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Pooh:
http://www.medscape.com/viewarticle/704792_print
Discussion
"To our knowledge, the ZIPP trial is the largest that has investigated an LHRH agonist (2706 women) and the only factorial study that has evaluated goserelin and tamoxifen simultaneously with a control group of women who received no endocrine therapy. Recurrence and breast cancer mortality rates in both the tamoxifen and control arms were similar to those from the EBCTCG overview.[3]
The overview of LHRH agonists,[4] based on an average follow-up of 6.8 years, reported data on recurrence, death from any cause, and death after recurrence. The main conclusions were that LHRH agonists had an effect on reducing the risk of these events similar to that for chemotherapy (such as FEC or CMF), and could be used as an effective treatment in women with ER-positive tumors, either alone or in combination with chemotherapy or tamoxifen. Furthermore, there seemed to be a particular benefit among younger women (< 40 years) who had received chemotherapy.
Although our earlier data were included in the overview,[4] our results from the long-term follow-up (average follow-up is 12 years) add further information on the effect of LHRH agonists and allow estimates of the absolute risk difference at 10 and 15 years after the start of treatment. In addition to information on recurrence and death from any cause, we analyzed the effect of goserelin on the chance of dying from breast cancer and the chance of having any event (recurrence, new tumor, or death). Our analysis also quantified the long-term effect of goserelin separately among women who did or did not have tamoxifen. Because tamoxifen is now offered routinely to many women, it is important to know what the additional benefit of goserelin is 10 and 15 years after the initiation of treatment.
Among women who did not receive tamoxifen, goserelin was associated with large reductions in the event rate, the chance of dying from any cause or from breast cancer, and the risk of having a recurrence; the effect remained substantial 15 years later. Although the effect of goserelin was smaller (and not statistically significant) among women who took tamoxifen, a difference in risk of 2-3 percentage points in absolute risk at 15 years might be important, given the high incidence of early breast cancer. This would correspond to treating 33-50 women with tamoxifen and goserelin to avoid one woman having a recurrence, new tumor, or death. Indeed, the number needed to treat at 15 years was 18 in women younger than 40 years who also took tamoxifen (Table 3).
The effect of goserelin was greatest in women who were node negative and in those with ER-positive tumors. Our results were also consistent with the observation that the effect of goserelin may be greater in younger women who had prior chemotherapy.[4]
A limitation of our trial is that it was based on 2 years of tamoxifen treatment, like many other studies at the time, though it is now standard practice to treat women for 5 years. Data from the INT 0101 trial, in which all women received chemotherapy, showed that the combination of 5 years of goserelin and tamoxifen was associated with a 9-year disease-free rate that was 9 and 7 percentage points higher among younger (< 40 years) and older (≥ 40) women, respectively, compared with those treated with goserelin alone.[9] Furthermore, there is evidence that a large proportion of women discontinue tamoxifen before 5 years. In a cohort of 2816 women in Ireland, 20% had stopped by 3.5 years with no further hormonal therapy.[10] Therefore, the effect of 2 years of goserelin or tamoxifen therapy might still be relevant in these women.
Data on the tolerability of goserelin were presented in our first report.[5] The most common side effect was hot flashes: This was experienced by none of the control patients, 26% of patients treated with goserelin, 17% of those treated with tamoxifen, and 44% of those who received goserelin plus tamoxifen. In a trial of 874 women with lymph node-negative breast cancer randomly assigned to receive six courses of CMF chemotherapy, goserelin for 2 years, or CMF followed by 18 months of goserelin, a greater proportion of women who received goserelin alone had hot flashes compared with those treated with CMF alone.[11] However, in the goserelin group, the incidence 3 years later was similar to that in baseline, but not in those who received CMF. This effect is expected, given that amenorrhea can be induced by either chemotherapy or goserelin, but is reversible after stopping goserelin but permanent after chemotherapy. Goserelin was also associated with an improvement in quality-of-life measures such as mood, coping effort, tiredness, nausea and/or vomiting, and overall subjective assessment of health, compared with CMF alone.[11]
Treatment-induced bone loss is a side effect of ovarian ablation or aromatase inhibitor therapy, which increases the risk of fractures or spinal cord compression.[12] In a subgroup of patients randomly assigned to receive goserelin (n = 53) for 2 years or CMF chemotherapy for 6 months (n = 43), loss of bone mineral density (BMD) was greater in the goserelin group.[13] Although there was partial recovery 1 year after stopping goserelin, the bone loss in the CMF group persisted. Although the combination of goserelin and tamoxifen may have a small additional benefit compared with either alone, there may be a further case for recommending both therapies because of the possible mitigating effect of tamoxifen on BMD. Markers of bone health were not measured in all women in the ZIPP trial, but the effects of 2 years of treatment with goserelin and tamoxifen on BMD were examined in a subgroup (n = 89) of patients in the Stockholm group.[14] The reduction in BMD was 5% in the patients treated with goserelin (with partial recovery 1 year after stopping therapy) and 1.4% in the patients treated with tamoxifen and goserelin.
There is accumulating evidence that zoledronic acid combined with endocrine therapy can also help prevent BMD loss. In a trial of 401 patients treated with goserelin, women were randomly assigned to receive 3 years of either tamoxifen or anastrazole, each with or without zoledronic acid.[15] There were reductions in lumbar spine and trochanter BMD when tamoxifen or anastrazole was used alone, but no material reduction when zoledronic acid was added. A combined interim analysis of two recent randomized trials, Z-FAST and ZO-FAST (total from both trials, n = 1667), in which all women received adjuvant letrozole, compared giving zoledronic acid either at the time of random assignment or only if their bone density fell below a prespecified cutoff or they suffered a nontraumatic fracture.[16] After 1 year, the score for lumbar spine BMD was 5.2% higher in the patients given zoledronic acid at the time of random assignment, and the total hip score was 3.5% higher. There was also evidence that the risk of recurrence was lower in these patients. The effect of zoledronic acid on survival and recurrence has been confirmed in a large trial of 1801 premenopausal women randomly assigned to receive endocrine therapy (tamoxifen or anastrozole), with or without zoledronic acid, with all women receiving goserelin.[17] The risk of death or recurrence was reduced by 35% (95% CI = 8% to 54%) among women who were given zoledronic acid. Given its benefits in terms of both bone health and clinical outcome, zoledronic acid could be considered as an additional treatment to goserelin.
The optimal frequency and duration of treatment with LHRH agonists are unknown. In the ZIPP trial, goserelin was given monthly for 2 years. Evidence from a randomized trial of 599 women with node-positive breast cancer indicated that a less frequent schedule (3-monthly depot of the LHRH agonist leuprorelin acetate, 11.25 mg) may be as beneficial as CMF chemotherapy in terms of the effect -- 5-year recurrence-free survival (HR 0.97) and after 2 years OS was better in patients given leuprorelin acetate (HR 0.64, 95% CI 0.46 to 0.90).[18] Nevertheless, no trial has specifically addressed the question of the optimal frequency and duration of goserelin treatment.
In summary, long-term follow-up of our large trial showed that goserelin had a demonstrable effect on survival and recurrence 15 years after starting treatment and is as effective as tamoxifen when each are given for 2 years. The benefit was greatest among women who did not receive tamoxifen (among every 100 women treated with goserelin, there could be 8.5 fewer breast cancer deaths), and there was a possible gain in those who did receive tamoxifen (among every 100 women treated with goserelin, there could be 2.6 fewer breast cancer deaths). It may be that women who are unlikely to complete 5 years of tamoxifen tablets may prefer 2 years of goserelin injections. It may also be reasonable to recommend both therapies to minimize the reduction in BMD associated with endocrine treatment."
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Voraciousreader I don't know why my recurrence rate clearly says 9% and yours says 10% though we both got a score of 15. I am not mistaken in what I am reading there. While I appreciate that you keep posting studies of its effectiveness right above your post someone posted a study that indicates Tomaxofin may fuel aggressiveness of some recurrences. Then I read a neutral thread (Bottle of Tomaxofin) where the women went in open-minded and hopeful and overwhelmingly these poor women are suffering QOL issues and worse. Sure some only have minor SE like hot flashes but I keep reading about things lie throat swelling and I can't even drink one glass of wine without getting throat swelling. And then there are those who suffer dizziness. I have low blood pressure and have fainted enough times to have great concern of that side effect especially because the last time I fainted I threw up right after and if my husband was not with me I could have choked on my vomit and died. I also have 2 young sons and if I am driving them around its not just me I am putting in danger. I am not worried about hot flashes or the other common SE like joint pain and cramps. Even if it is true that my risk goes from 9 to 18% that is still 82% that I will not get a recurrence. And keep in mind that I am not doing nothing. I had bmx, I am taking DIM (which I am feeling the effects of in a positive way), taking vitamin D, I am eating better, exercising and stressing less. My faith has grown from this experience and this is why I believe I am at peace with my decision. I question some things that seem obvious such as we are told excess weight feeds estrogen so we should get our BMI down and exercise. Now go over and read Bottle of Tamoxifen and you will see almost all of these women are gaining weight and many are struggling with fatigue and joint pain. Voraciousreader I am not dense so please don't address me with capital letters to get your point across. You made your decision for you and I am glad you feel so strongly about it. Perhaps in 10 years DIM will have the studies behind it to show it is as effective as Tamoxifen but without all the side effects. Either way I am taking the DIM train because, for all of the reasons above, I refuse to get on the train putting a known carcinogen in my system for a bit higher chance of not having recurrence. With all the other things I am doing my odds are reduced some also while I have a good QOL and thank God those odds are pretty good.
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Mepic... I am not implying you are dense. I am posting to make a point that everyone could make their own choice based on facts. You can have an opinion and make a decision based on your opinion of facts. But you cannot change facts. The facts in your OncotypeDX test report that your individual risk of METS is 9% based on taking Tamoxifen. If you don't believe that Tamoxifen will reduce your chance of METS, then you should dismiss the OncotypeDX report. Tamoxifen reduces the chance of distant recurrence. A little for some, a lot for others and that's a fact.
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I am loving this dialogue, keep it up ladies. Very informative
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I am not disagreeing that Tamoxifen helps some, in fact I truly believe that for higher staged women it IS a great drug. If I was stage 3 I would be on it without question. You know the curious thing about my having a 9% recurrence rate and Voraciousreader you getting a 10% recurrence rate is that I remember saying a few times, after seeing cancermath and adjuventonline results (with Tamoxifen respectively 77 days of life benefit added and 4% lower recurrence rate per those sites) that "It's not like I'm even getting 10% benefit" when I was making the argument that I did not want to take it. So perhaps being in the double digits really clarifies it for you and that's good, but getting 9% made me really question taking it for me personally. And I am not dismissing the OncotypeDX results because it does confirm chemo would not help me (which is what this test was created for). Someone posted this earlier and it must be from the professional version of the NCCN guidelines and it definitely backs my point of view, again for me personally as my tumor is .9 mm:
If you read NCCN guidelines, this is what it says about that:
"given the favorable toxicity profile of the available endocrine therapies, the Panel recommends the use of adjuvant endocrine therapy in the majority of women with hormone receptor-positive disease regardless of menopausal status, age, or HER2 status of tumor. Possible exceptions to the recommendation of adjuvant endocrine therapy for patients with HR+ disease are those patients with node-negative cancers less than or equal to 5 mm or 6 mm to 1 cm in diameter with favorable prognostic features where the prognosis is so favorable that the benefits of adjuvant endocrine therapy are very small.” (emphasis added)
I believe the specifics of my prognosis are all favorable and so the benefits are small compared to the risks which for me are great. Even the fact that vascular invasion was "focally present" was dismissed by my BS as she said that means there was just a dot seen and she said it was insignificant to my prognosis. The only study I found about vascular invasion concluded focally present (the smallest finding) had the same outcome as no vascular invasion. If I had a magic wand I would wave it and wish us all to be at peace with our decisions and to live long disease-free happy lives. Since I don't I will cling to my faith as His grace is more than sufficient for me and I will pray for blessings to all. Be well all.
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I too very much appreciate the extent that both of you are willing to detail the information you have and what you each see as valuable to consider about this issue.
A.A.
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Hi Voracious ...great info but still not convinced that ovarian supression is a benefit ........ABC trial confirms the Zipp Trial ...no added benefit ????? Reason why i remain confused .....any further insight ?
http://jnci.oxfordjournals.org/content/99/7/516.full
Ovarian Ablation or Suppression in Premenopausal Early Breast Cancer: Results From the International Adjuvant Breast Cancer Ovarian Ablation or Suppression Randomized Trial
This article regarding the ABC trial confirms the following
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Quote
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Background Substantial survival benefits exist for patients with early-stage breast cancer who undergo treatment with single-modality tamoxifen, ovarian ablation or suppression, or chemotherapy. To determine whether additional benefits exist with combined treatment, the Adjuvant Breast Cancer (ABC) Trials were undertaken.
Methods The ABC Ovarian Ablation or Suppression Trial randomly assigned pre- and perimenopausal patients with early-stage breast cancer who were receiving prolonged (5 years) tamoxifen treatment with or without chemotherapy to ovarian ablation or suppression (by oophorectomy, ovarian irradiation, or treatment with luteinizing hormone–releasing hormone agonist) versus no ovarian ablation or suppression. Trial endpoints included relapse-free and overall survival. Hazard ratios (HRs) were derived from Cox models, and all statistical tests were two-sided.
Results Between 1993 and 2000, 2144 (1063 ovarian ablation or suppression, 1081 no ovarian ablation or suppression) patients were randomly assigned. A total of 942 (89%) received ovarian ablation or suppression as allocated. Overall, no evidence of a benefit for ovarian ablation or suppression was observed for relapse-free survival (relapse in the ovarian ablation/suppression versus no ovarian ablation/suppression group, 290 events versus 306 events, HR = 0.95, 95% confidence interval [CI] = 0.81 to 1.12; P = .56) or overall survival (death from any cause in the ovarian ablation or suppression versus no ovarian ablation/suppression group, 215 events versus 230 events, HR = 0.94, 95% CI = 0.78 to 1.13; P = .44), nor were differences seen after adjustment for age, nodal status, or estrogen receptor (ER) status.
Conclusion Overall, no added effect of ovarian ablation or suppression was seen on relapse-free survival or overall survival of premenopausal women who were treated for early-stage breast cancer. However, the role of ovarian ablation or suppression in young (<40 years) women with ER-positive tumors, especially those not receiving chemotherapy, requires further study."
End quote
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So iam still not convinced that adding OS to Tamox is worth it.
Trust me i want to do the max i can but if there is no clear benefit ....I remain confused .
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Pooh...No one knows whether or not adding ovarian suppression to Tamoxifen increases survival yet....Have you read what Annice and I always refer to? We need to see the preliminary results of the SOFT and TEXT trials to see if adding ovarian suppression to Tamoxifen gives us the same survival benefit or better than chemotherapy. We will probably not know the preliminary results until the end of this year. AND, no one knows yet how long to do ovarian suppression for. That's what we're all waiting to find out....
But....getting back to Tamoxifen and metastasis...for early stage breast cancer, Tamoxifen REDUCES the chance of DISTANT recurrence, that is metastasis.
AND..............................getting back to the professional version of the NCCN guidelines....it was I that recommended that patients read it. Now....let's not compare apples with oranges. If you read the NCCN guidelines, the guidelines recommend the OncotypeDX test, if available, AND your tumor is greater than .5 cm. The OncotypeDX test gives you ADDITIONAL information with respect to HOW AGGRESSIVE YOUR TUMOR IS. Until 2011, the NCCN guidelines did NOT include the OncotypeDX test. Based on the OncotypeDX score, if your tumor is greater than .5cm and at LOW RISK OF RECURRENCE, then the NCCN ONLY recommends Tamoxifen. If the tumor is smaller than .5 cm then the NCCN guidelines mention that you should "consider" Tamoxifen.
Now, with respect to what you emphasized, Mepic....
"6 mm to 1 cm in diameter with favorable prognostic features where the prognosis is so favorable that the benefits of adjuvant endocrine therapy are very small.” .....what THAT means is...if you DO have the OncotypeDX test (because it IS recommended for 5 mm and larger tumors) and you get a VERY LOW recurrence score AND you have OTHER favorable prognostics, THEN the risks of taking Tamoxifen may very well outweigh the benefit. Now keep in mind, the NCCN guidelines say (I'm looking at page 17 of the Professional Version)IF YOU DO NOT DO THE ONCOTYPE DX TEST on a tumor larger than .5 cm then the LEVEL 1 EVIDENCE (WHICH IS THE STRONGEST LEVEL OF EVIDENCE) RECOMMENDS ENDOCRINE THERAPY plus/minus CHEMOTHERAPY. So basically, what additional information you gained by getting the OncotypeDX test was that you were told your risk of chemotherapy outweighed the benefit. And by taking Tamoxifen, you would reduce your risk of metastasis to 10% over the next ten years. The information DOES NOT IMPLY that your prognostics are so favorable that the harm of Tamoxifen would outweigh the benefit because without the OncotypeDX score...had the OncotypeDX not been done, your physician would have had to discuss with you chemotherapy in ADDITION to the Tamoxifen.
Finally, I'm not saying that you NEED to take Tamoxifen. Every patient needs to know what their risk tolerance is, what co-morbidities they may have and what QOL issues may occur due to side effects. But the facts are simple. Tamoxifen reduces the chances of metastasis for early stage breast cancer. For some, the amount of benefit is greater. And I might digress for one more moment...you mention that if you were a higher stage, you think your amount of benefit from Tamoxifen might be greater. That is questionable. What some researchers believe is that for patients with higher stages and more aggressive tumors, patients get GREATER benefit from the chemotherapy than from the Tamoxifen. Instead, early stagers with high ER-Positive tumors get the greatest benefit from Tamoxifen, and with low OncotypeDX scores, the least benefit from chemo.
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We all inevitably need to make our own decisions about treatment and as VR says we are lucky as early stagers because we have choices.
My perspective is biased becaus I am a doctor. One of my first medical jobs after qualifying in 1992 was on a breast oncology ward in a hospital in the UK that pioneered treatment with tamoxifen. I saw so many women who " wore my bra before me" and the overwhelming majority died. You might say most of them were not early stagers. Most were not but some were. When I was diagnosed with BC my oncologist pointed out a landmark study in the New England Journal of Medicine a few years back that demonstrated that after 5 years of tamoxifen treatment, long term follow up showed highly significant improvement in survival for treatment versus no treatment that was maintained at 15 years after diagnosis I.e. tamoxifen short term protects for the long term. When I was diagnosed I read a stage IV thread called stage IV roll call with people sharing their journey from diagnosis. I wanted to see if there were any stage I grade 1 women in that thread. To my distress I read posts by many women who had been stage 1 at diagnosis. There were several posts from women saying they had decided not to take tamoxifen and they wished they had realised the difference it could have made. They even said if any early stagers were reading the posts we should take note and think carefully about our treatment options because once stage IV (distant metastases) arrive options are much more limited and never curative.
It is an individual decision. No one knows for sure that they are safe from recurrence. However it is clear that many women do not take their tamoxifen reliably or regularly or stop after a shorter time than they were recommended. Long term studies that publish about recurrence don't always have information about compliance to medication- just what was prescribed, so my gut feeling is that at least some recurrences occur in the so called tamoxifen treated groups because of (possibly surreptitious non-compliance).
Furthermore it is clear that the oncotypeDX test validity is totally based on 5 years of treatment with tamoxifen so it can't be used as a flippant safety tool if tamoxifen is thrown in the trash!
Regarding the ovarian suppression story Pooh you can make your choice. The evidence for the benefit of tamoxifen is overwhelming and well established. There is no information out there at the moment that can prove you will do better if you add zoladex to your tamoxifen. Some of us choose to use a belt and braces approach and add this treatment because we have our hunches based on the data available. I read lots of studies of use of OS in young women with stage IV disease and in that context it's a no brainer. So my rationale is that if somebody made some sort of error in my diagnostics somewhere along the line and there was some LVI not picked up or an node outside the axilla that contained tumour or whatever it is that can lead to stage IV after a number of years then I will be covering all bases. However it is right that OS adds to a woman's burden of side effects and this is a personal choice with no right or wrong.
We must do what we feel we need to do but we should not ignore the facts.0 -
These are not permanent, so if the SE are overwhelming, then one can stop. I can't say I've been SE-free, but OS and Tamoxifen (only have been on the latter a few days) SE are managable.
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Annicemd, you made a very important point about compliance. And I think your instincts are logical. Stage I women who decide not to follow doctor's recommendation and forgo taking Tamox, or who take Tamox and can't tolerate side effects, may not readily admit this to their doc. It's just human nature not to admit defeat. Which will skew results. And, looking at all of this data from a bird's eye view, we can see that science has a long way to go in setting treatment protocol. That's why we, the patients, are often troubled and that's why we are debating. Certainty is absent. Paths are clear but nothing is definite. There are plenty of women who relapse after BMX, chemo and Tamox and plenty of women who are fine with nothing more than a lumpectomy. We all wish for concrete answers but none are there. Only recommendations that have changed substantially even in the 5 years I've been a cancer survivor.
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Love this fascinating thread! More info. to take to my BO on the 20th!
Um...WHAT is Goserelin-- OS drug?? ...and what is DIM?
Thanks!!!!!
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Annicemd:
Can you post the link to the Stage 1V Rollcall thread you referred to?
Thanks!!! Your post was really interesting.
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"...And by taking Tamoxifen, you would reduce your risk of metastasis to 10% over the next ten years. The information DOES NOT IMPLY that your prognostics are so favorable that the harm of Tamoxifen would outweigh the benefit because without the OncotypeDX score...had the OncotypeDX not been done, your physician would have had to discuss with you chemotherapy in ADDITION to the Tamoxifen."
Vora, I never inferred that the information from Oncotypedx implied my prognostics were favorable. I was basing it on my pathology findings of stage 1b, grade 1, 0/3 nodes, er+,pr+, hr-. All 4 doctors I have seen told me they were pretty certain I would not need chemo. It was never really on the table and the Oncotypedx test confirmed this. I can also tell you my breast surgeon, who is excellent, at our first appointment post bmx told me my prognostics were so favorable that she didn't even think the oncologist would ask me to do Tamoxifen. The next time I saw her she did say Tamoxifen was the standard of care and suggested I could try it and get off of it if I had severe SE. And remember for me it is 9% risk reduction, not 10% The facts are Tamoxifen helps some but the facts are also that it is not certain that it will help all. My friend who has worked at a large cancer center for many years told me doctors must prescribe the standard of care (Tamoxifen) but that many women opt out of taking Tamoxifen. She further said patients who took Tamoxifen also recur. She agreed with me that if she were in my shoes she would not take it either. It is one thing to tell someone to take it, it is quite another to take it yourself. I respect women who take Tamoxifen and feel they are very lucky if they can tolerate it. I know I won't be able to and thank God I am in a position to make the choice not to. If I had a bigger tumor, positive nodes, er-,pr-, hr+ or extensive vascular invasion I wouldn't hesitate to take Tamoxifen. This is a very personal decision. Unfortunately Renee I have seen some posts of women who have SE that appear to be permanent after taking Tamoxifen (vision is one I recall, I don't remember what the others were but I think it was joint pain). Then again some women get no SE on Tamoxifen and if I knew that was going to be my experience of course I would take it. But I am a bad metabolizer of drugs. I remember I went to the ER for severe back pain after a car accident and they gave me morphine. I could not stop throwing up in the ER and later at home I was hallucinating. I recall hearing someone in the ER saying, "Man you would be a bad drug addict!" LOL
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