Stage 1, grade 1 and pre-menopausal
Comments
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AA many or all of us who have heard your story feel for you terribly and it's seems totally tragic that your life as you know it has been taken away even though your cancer has been successfully treated.
I agree with the thoughts that drugs are often recommended without detailed explanation of risks and side effects. There is an information sheet with every drug reporting all reported side effects, but the reporting has to be done by doctors through a special system so if your doctors didn't report your specific side effect then it will not appear on the drug info as it seems, thankfully, to be a very rarely reported problem, I have not seen what you experienced before. The pharma industry were unchecked for many years promoting drugs and actively hounding doctors with gifts, exotic trips etc to "encourage" prescribing. I have my own issues about my use of birth control pills. Breast cancer is a recognised risk of taking these pills but every piece of literature says this is exceptionally rare. I took these pills for many years continuously without a break until I had my children. I felt reassured and safe because of the reassuring reports. Like Mepic I am very petite, weight 46 kg and in retrospect the high doses of estrogen that my small body and my small breasts were exposed to was probably in my view the cause of my cancer as I have no other risk factors at all, unbelievably healthy lifestyle, no family history of BC or any cancer and my oncotype was low suggesting my tendency to tumour promotion is low (that's essentially what the oncotype is measuring). Now I looked back at all the papers on safety and I am sure there was some hushing up of results and what is there clearly understates the real risks e.g. Saying there is a risk of BC with these pills in small print then paragraphs about how these pills protect against endometrial and other cancers! Now the ABPI have blocked all unsolicited sponsorship and basically bribery from the pharma industry and things will be very different going forward.
Back to side effects... There is not a one size fits all answer. We all have to make our decisions about treatment and we will all make different decisions based on our experience and personal views. As long as we are aware of the information that is out there then we are making an informed choice and no one should be bullied into following a treatment path that they are not happy with. There is always going to be a legacy associated with being a cancer survivor. One thing that is very important for quality of life is acceptance. If we can accept what has happened and accept our legacy then immediately our quality of life will be improved going forward. If we feel cheated, tricked, angry, betrayed, it becomes difficult to cope with an manage the legacy. So as I said before we must do what we feel right for our own situation knowing that there is not a right and wrong answer, just lots of information to process
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This study speaks to the question of why physicians are placing greater importance on the genetics of a tumor over traditional pathology reports:
http://onlinelibrary.wiley.com/doi/10.1002/path.2648/full
"...Histological grading of breast cancer has been used as an important parameter for treatment decision making. Currently, it is performed by histopathological analysis, using the modified Bloom and Richardson method 94, also known as ‘Nottingham grade’. Despite its importance, concordance between pathologists has been reported to be suboptimal 95, in the range 50–86%. Although the clinical significance of grade I and grade III is well defined, approximately 40–50% of the tumours are classified as of grade II, a category whose interobserver reproducibility is modest and clinical significance equivocal. Ma et al59 were the first to observe that histological grade I and grade III breast tumours displayed distinctive gene expression patterns. Using a 200 gene set correlating with tumour grade, the authors further described that grade II lesions either exhibited a hybrid pattern of grade I and grade III signatures or expression patterns most similar to either grade I or grade III lesions 59..."
Genetic tests, such as the OncotypeDX test, are one tool to add to the many tools physicians have to get a "feel" for the aggressiveness of a tumor. It appears that physicians are moving away from the more traditional tools and placing greater emphasis on the genetics of the tumor to guide treatment decisions.
While genetic tests often confirm the pathology report with respect to how aggressive a tumor is, it is not uncommon to see from time to time Grade 3 tumors classified genetically as unaggressive and Grade 1 tumors bumped up to being more aggressive.
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I agree with others. The level of shared discussion in this thread is remarkable.
annicemd, thanks yet again for your candor. Marcia Angell's 2004 book The Truth About Drug Companies was helpful for me in respect to understanding the problem with the relationships between the drug industry and the medical industry.
Whether in part the constant suppression of information to me by well-meaning providers is a reflection of my own personality or not (who knows?), it has been an eye-opener for me. These are hard-working human beings that I generally like and respect as people. We ALL have our warts....
As a bc patient, once I was out of "basic" treatment I looked for some kind of materials that were honest with patients. I was quite surprised to find a very good source here in Alaska, so I ordered materials from them and reviewed them. They aren't perfect, but they were better than anything else that I'd been able to find. I personally obtained some DVDs from the company and bought a DVD player and provided the lot of it to my PCP's busy internal medicine practice, in behalf of breast cancer patients, since we are not close to a major cancer center. I bought an attractive white wicker basket for those as well as various books that patients at this site and others have found worthwhile or inspiring (my own contribution was a book of Erma Bombeck's humor). The basket is kept in the chemo admin room where patients sit for several hours to receive chemo, and none of it existed until I provided it. I tested the new equipment before donating it. The 20-30 year old nurse who has never had breast cancer or menopause generally administers chemotherapy for the practice. After 6 months I checked on the status of this donation. Sad to say, the nurse flippantly said that the player had "never worked properly" and that she had "thrown it away". I checked the basket, and none of the DVDs had even been opened. I was mostly just amazed that a person who can so easily administer drugs and treatments that are difficult for patients and that require special handling, would not at the very least have been interested in watching the materials personally enough to open them and view them... even if the player didn't work... She could have looked at them elsewhere. She is just one person, of course, and not necessarily representative of the majority of health care providers. But the constant evidence of that kind of obliviousness to the reality of patient experience that I've encountered is quite remarkably prevalent, even in the practice of a really good PCP. These individuals do not see or record what they do not want to see or acknowledge.
I do think my situation is not common, but I also think it is more common than we can know.
VR,
I know from significant personal experience that pathologists are humanly subjective, and have marveled at (and struggled to understand) their sometimes rather extensive descriptive literary efforts in trying to achieve the most accurate human expression of what they see. I personally think that a combination of the mechanical genetic analysis and the human observational analysis is where I feel most comfortable. If genetic analysis actually included ALL genetic data rather than just what has been chosen as being most representative thus far, I would have more confidence in it as a sole source for recommendations.
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AA...No one is saying that one needs to place more confidence in the current genetic prognostics tools that we have. Instead, we need to appreciate the limitations of both genetics and pathology analysis, while also appreciating what the current genetic prognostics tools that we have that may support or question the pathology analysis and ultimately help tailor a more personalized treatment protocol. A pathology report might SUGGEST a favorable prognosis, but with the help of the OncotypeDX test IN ADDITION to the pathology report, it can help a physician PREDICT who can benefit greatly from chemo from who may not. One tool is NOT BETTER THAN THE OTHER. They need, like you say, to be used together until something better comes along. Patients who a decade ago that had Grade 1 tumors, especially our premenopausal sisters were NOT GIVEN the number of choices that we now have. Most patients and ESPECIALLY premenopausal patients, regardless of their tumor Stage and Grade were told they needed chemotherapy. Also, by contrast, patients WHO WEREN'T metastatic DIDN'T RECEIVE TAMOXIFEN! Who would have thought that with the help of a genetic test that treatment protocols would be turned upside down?! Now the Oncotype DX test can, for many patients, tell us who should be treated more aggressively with chemo and who can benefit most from endocrine therapy. Sure, there's still the unknown, but compared to a decade ago, physicians now have a much better "feel" for a tumor thanks to what genetic testing we now have, and THAT is GREAT NEWS!
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Violet 1,
I am very much looking forward to sitting down together in person too and am glad we have been able to connect here. The only difference I see between us is that I've simply had more years to wonder and question and learn about it all, and much of that is from the wisdom of others.
My provider, for better or worse, is truly overloaded out here. What has been done to improve things is the addition of NPs to the practice. The NP "gets" some of what I have to tell her about the results of the treatment I have had. But no provider, either here or in my visits to the cancer center in Seattle, addresses the problem of gender loss. The most hopeful information is my own discovery and monitoring of the 5-year long process of obtaining approval for the SERM ospemifene for non-breast cancer patients. None of the providers I've mentioned it to have been aware of it, and that includes the cancer center OB-GYN, the onc, my local internal medicine practice, and the counseling center at the cancer center. While it has been carefully not tested on cancer patients in order to achieve approval, I want to know more about whether, given that it is a SERM (tamoxifen is also a SERM) it could actually be superior to tamoxifen for use by older women like me.
I'm decaffed so not a "real" coffee drinker, but am looking forward to sharing a ripping good time with you!
A.A.
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VR,
I do feel thankful that genetic testing is being introduced to see how it works out in our behalf, and is available along with pathologists. Used alone, it can't tell us for certain precisely who will actually benefit from more aggressive treatment or from any particular therapy. Unfortunately it isn't designed to tell us who definitely would be damaged by more intensive therapy.
The primary difficulty is that premeno patients have no personal experience with the longer term effects of the therapies, and they are mostly younger people. They are happy just to be done with treatment when they finish, and don't yet experience the full range of the effects of treatment and depletion of estrogen, testosterone, etc. It is known that most of these early stage patients would never need anything more than surgery to not have recurrence.
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AA - thank you for sharing your experience, and I'm so sorry that your SE's have been so life-changing. Your second point above (about not knowing the longer term effects) weighs on my mind a lot. My grandmother had BC at age 59, and even though she was post-meno, she has been recurrence free for 27 years after a single MX with no adjuvant treatment. So I wonder if these drugs are really necessary . . . But being at an age with young kids, my fear of recurrence seems to outweigh my concern about possible long-term SE. Just wish I had been DX sometime in the future when they'll know a lot more than they do now! (Don't we all??
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min937,
I agree -- it is harder I think to act completely in self-interest when one has children. I think about the person with bc who is already juggling a job along with the demands of eldercare or the care of those with disabilities, and I think how difficult that choice must be. On the one hand, if there is no one else carrying the load then they feel they don't want to take any chances on recurring and leaving the dependent person without their help, and on the other hand they don't want to do treatments that are difficult because they aren't as able to maintain all the commitments they have.
In that sense, for them it is all the worse to know that the vast majority of early stage bc patients don't need anything but surgery to remain recurrence-free.
The longer care providers minimize or ignore or refute the genuine existence of significant SE's, the longer it will be before there will be much focus on reducing or eliminating them, to let us make the BEST choices. Right now the recognition and acknowledgement of SE's generally runs from poor to mediocre, with some token pats on the head.
Based on my own experience, like Annicemd said, being given accurate and complete information about the "good" and the "bad" information to consider up front by providers results in being able to accept conscious responsibility right from the start for whatever comes along later, and for moving forward. I'm glad if at least some of that happens for more people as a result of this discussion.
A.A.
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Wow, my onc laid out all the information for me--the stats w/ or w/out various treatments, the SEs from various treatments... So, I went into all of this with my eyes wide open. But, from this discussion, sounds as if that is not the case for most (?).
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Renee...It is my humblest opinion that most physicians TODAY are good at discussing all of the issues that you mentioned. I am glad that you had a good experience. I am sorry that AA did not receive adequate information from her physician. She and I have discussed this issue on other threads during the last year or two. Reading these discussion threads, I get the impression that you and I are in the MAJORITY. I believe my physician did an EXCELLENT job of explaining to me everything that I needed to know so that I could make an informed treatment decision. Not only did he explain EVERYTHING, but it wasn't until months later, after doing further research, that I realized how extremely knowledgeable he was.
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Renee, everyone's experience is different, and it sounds like yours is working out very well. I was diagnosed and treated 10 years ago. There is still plenty of room for improvement, and there always will be. It took sharing the experience and persistence of many patients over the years to seek better doctor-patient communications that patients today are more likely to receive and consider to be the norm. I'm glad it is much easier for patients today than it was when I was diagnosed.
A.A.
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I took over half an hour filling out an 8 page questionnaire for the first onco I saw and turned it in before I saw her. It had my health history and mentioned my severe sensitivity to meds.. At our first (and only appt) she walked in, never bothered to look at my questionnaire, nor do I even think she did more than glance at the pathology report. She would not answer my questions. My husband and I left there wondering why we had bothered to miss work to meet with her. I mean she might as well just have called in a prescription for Tamoxifen from somewhere else, as that was all she had in her arsenal. Seeing another onco, who comes highly recommended, next week. At least I have a wonderful BS and PS.
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mepic,
The standard professional response is to recommend tamoxifen, so I won't be surprised if any physician recommends it, but I just hope the physician you see isn't just adding more initials behind his/her name to impress people and instead has better information to give you about the various values of your possible choices.
To anyone here,
All of this takes me back to my question asked in my original posts on page 23 or so of this forum. For example, the news flash article on this website about high risk patients not taking tamoxifen cites information for those who are at high risk and have never had cancer but considering taking tamoxifen for prevention, showing the following benefits and risks:
"The scientists who wrote the report for the USPSTF reviewed results from studies looking at how effective tamoxifen and Evista were at reducing the risk of breast cancer in high-risk women who had never been diagnosed with breast cancer.
They found that tamoxifen and Evista reduced the number of cases of invasive breast cancer by seven to nine cases in 1,000 women over 5 years compared to women who were taking a placebo (a sugar pill that looked just like tamoxifen or Evista). Tamoxifen seems to be a little better at reducing the risk of invasive breast cancer than Evista.
Still, tamoxifen may cause side effects, some of them serious, including:
- blood clots
- stroke
- a higher risk of endometrial cancer
- cataracts
- leg cramps
- weight gain
- sweating
- hot flashes
- joint pain
While Evista also may cause blood clots and stroke, women taking Evista are less likely to have these two serious side effects compared to women taking tamoxifen. Evista also may cause:
- hot flashes
- sweating
- joint pain
- weight gain"
The reason I posted way back there originally was because, aside from the convenience of taking a simple tamoxifen pill in that instance, I don't understand why there has never been a trial to compare something equally simple, like vitamin D, to actually find out whether people who are very very early stage bc patients get exactly the same or even better benefit from that as compared to tamoxifen?
Or are we so brainwashed we have been unable to consider that possibility? I just don't understand why are so inclined not to seek that simple comparison. I'm amazed that we aren't smarter than that. In the above question about the effectiveness for prevention, we are only seeing 7 to 9 persons out of 1,000 who are considered to be at high risk benefit from taking tamoxifen for prevention.
Again, I want to make it clear that that study only refers to prevention for those who have never had bc but who are at high risk for it. Are people so biased in favor of synthetic drugs when it comes to something as serious as cancer that they believe vitamin D couldn't possibly do as well or better?
A.A.
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AA..the standard professional response does NOT recommend Tamoxifen. If you carefully read the professional version of the NCCN guidelines, there are situations where patients are asked to "consider" or "recommend" Tamoxifen and in some situations, they suggest no endocrine therapy as well. According to my diagnosis, the NCCN guidelines say I should "consider" Tamoxifen. My physician made it very clear to me that I should "consider" Tamoxifen rather than make an all out recommendation.
Regarding your second question, which is a good one, I suggest you start a new discussion thread and ask the question. We have discussed this issue before. I would like others to know that it would be UNETHICAL for a clinical trial not to offer the standard of care. So designing a study of a supplement or vitamin in lieu of no treatment, would not pass muster with the FDA. I know this to be a fact because there is now a clinical trial with a supplement that the researchers are testing on patients who have the family of disorders that the DH has. The patients in the placebo group are still getting an old treatment... which they believe helps, but doesn't help much or at all for many patients. It would be unethical for them to not offer a known treatment.
Regarding Tamoxifen and Evista...Keep in mind there is a huge difference between those patients at high risk vs. those who have cancer ... Especially when designing trials.0 -
And AA... You should not distinguish between a synthetic treatment or a natural treatment. Most of them come with potential side effects and interactions. I never can understand why people think that taking some vitamin or supplement is less dangerous than an FDA approved medication. Has everyone been reading the news about carnitine??
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Just wanted to second what Voracious Reader said about physicians not automatically recommending Tamoxifen. I fall into the guidelines (based on tumor size as I was >90% for both ER and PR) where standard of care is for me to "consider" Tamoxifen. My oncologist presented the information on recurrance rates, risks of a second cancer, and risks of side effects and left it completely up to me to decide - he most definitely did not push for one way or the other.
I decided that since I don't have anything that would raise my risk of the most serious side effects, to give it a try and be prepared to re-evaluate if the "quality of life" side effects became bothersome. He agreed that was a reasonable approach to take, but I got the impression that had I decided against it, that would have been ok with him, too. So far (6 weeks in) I have had zero problems and for now at least, plan on staying on it.
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I have personally seen too many people affected by drugs approved by the FDA to trust the FDA 100% I see people on prescription meds walking around like zombies, barely able to hold a conversation or with such obvious permanent side effects that they are no longer the person they used to be. My mother's friend suffered heart problems from PhenPhen (spelling?) I know bad substances can come from herbs and plants (cocaine for example) but I have also seen people cure their ailments holistically when medical science failed them. Take a really poor country, for example. They are more likely to use herbs to cure their ailments whereas we in the Western world use drugs, over-the-counter and prescribed. These "poor" countries have less cancer than we do. They seem to live into old age without many of the ailments that are common here in the U.S. Then when we take a drug and it causes side effects (sleep disorders, for example) then we are put on other medications to offset the SE of the original drug. Next thing you know you are on 2-3 FDA approved drugs to be able to tolerate the first drug. This is why I personally made the choice to take DIM and Vitamin D and not Tamoxifen. Other than a 2 second dizzy spell the first night I took DIM I have had no side effects and in fact feel fantastic-better than before my dx because all I am really ingesting is a pill which is the equivalent of 2 pounds of cruciferous vegetables. Can I be sure the DIM is reducing my estrogen and keeping cancer from coming back? No. But I couldn't guarantee that Tamoxifen would do that either. The difference is I feel really good and strong and am at peace with my decision and have faith that I am making the right decision for me.
Alaska, this week I see the Onco through my insurance. The Onco who has all the other specialties I will have to see as a second opinion after that but I will keep you posted on how that goes.
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VR,
Anytime a medication is mentioned as either one option or one option out of others to consider, it what it is; a standard professional recommendation for consideration based on such guidelines as the NCCN guidelines you referred to.
It is not standard based on guidelies such as the NCCN guidelines to recommend vitamin D. It is quite accepted and common, however, for medical providers to recommend vitamin D supplementation to breast cancer patients, including those who turn down the recommended option of tamoxifen as well as those who accept the recommendation. Some patients who would like to choose from the professional recommendations offered and take tamoxifen as one recommendation often do take both. That of course could change the results of a study that is about tamoxifen use, but patients still can and do take the supplement.
Since the results of the trial for high-risk patients who have not had breast cancer produced so few patients who benefitted, vitamin D could actually be as effective or more so than tamoxifen. But for the patients who do decide not to take the professionally recommended option for tamoxifen and who would be willing to take vitamin D, perhaps it would not be completely impossible to find a way to collect the results as an official study. After all, none of the patients being studied actually were diagnosed with cancer to begin with.
My post did not indicate that there were not potential side effects or interactions to any substance, synthetic or natural, although perhaps your reference is indicative of a preference for one over the other.
As a patient diagnosed with early stage bc and the various choices open for consideration, it is of interest to some of us. I wish we were able to get advice as thorough about natural substances from our team of doctors on the tumor board as we are able to get about synthetic substances. That is relevant to this thread about making choices.
A.A.
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No. Finding those who took the Vitamin D would not be considered the gold standard. It could possibly be a RETROSPECTIVE study... But then you would need to conduct a clinical trial in order for it to be considered a possible treatment. So again you would be back to square one with it not being an ethical study. Could you please move this discussion to it's own thread?
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AA there is a lot of interest in studying outcomes of many diseases in relation to vitamin D status and supplementation. Similarly there is a lot of interest in iodine status and thyroid disease. Recently we have found that magnesium deficiency is a major problem in people treated with proton pump inhibitors such as losec. There is still SO much we don't know. To develop strong enough evidence to establish a treatment as a standard of care takes time and huge amounts of funding to carry out these studies. That is why tamoxifen is so "popular" with oncologists because the evidence is established in women with ER positive BC and no other hormone treatment including evista or zoladex or other interventions such as vitamin D, metformin etc have anythnig near the significant results that tamoxifen has at the present time. That does not mean these treatments are not as effective as established treatment but we don't know that they are, and in the medical world we are bound to the use of established evidence based treatments.
It is true that we need to look at doing research in a different way and VR has already indroduced us all to DR Eric Topol who is spreading the word amongst doctors that medicine needs to change and in particular we need to learn how to individualise and tailor treatment to meet individual patient needs rather than the standard approach of undertaking huge "number needed to treat" studies which means that many people are treated with the same treatment but only a handful actually benefit. As I said before we cannot and should not ignore what we know as fact but that said, going forward we do need to think carefully about how we undertake medical research going forward and things are changing but we still don't have all the answers0 -
Annicemd,
Individualized medicine is ideal, and I understand how it could fit with modern technology for a more accurate way to track patients up front, but no one has explained the really key part yet, which is about just how it would work to find the "right" medication to match each individual's genetic profile.
So far, what I've seen indicates that the targeted drug to match the genetic profile for HER2 positivity results in ALL patients who test positive being given the targeted drug, with some not responding, some not benefitting or needing it at all, some benefitting for a while, and some benefitting for longer. Some spin-offs have been developed that are also targeted HER drugs but they haven't been terribly effective. I'm not clear as to how the exact drug to match each patient exactly for good, not just temporarily before moving on to the next spin-off, would be done.
I'm sure I don't quite get the entire idea... or else it isn't yet entirely designed. To me it sort of seems a bit premature and like playing with spendy toys to buy into all the technology and technological support for it, without a clearly defined way to achieve the end result.... the exact drug to work for each person's exact genetics every time, permanently. It seems like they can match the genetics through individual profiling, but not stop the genetic changes and mutating?
A.A.
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P.S. It also sounds to me like the method would be to use much smaller numbers of people in trials that are genetically matched to the target drug to see whether the drug works. If it doesn't work, or only works for some, then the ones the drug didn't work for would be left to try what? They likely wouldn't be eligible for any other trials once they had been exposed to the first drug trial, would they, since that would confuse the results for the successive trial. And it takes a lot of money just to get any targeted drug past animal studies to use for human targeted trials, so each small group of genetically targeted treated patients would cost a lot just to get to the point where humans would be used..... unless they don't use animals at all... but then how would they come up with masses of different targeted drugs to try on humans?
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VR,
It depends on what "ethics" means. Since the patients tested did not have cancer, what is the ethic behind subjecting them to the SE's of tamoxifen, including the more serious SEs? If they can be tested with tamoxifen even though they don't have cancer, I don't see why they couldn't be tested with vitamin D3 -- other than that there is a pre-trial bias in favor of tamoxifen and against a commonly used OTC substance.
A.A.
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AA...I will no longer discuss this topic on this thread. If you would like to create a new topic on another thread I would be happy to continue the discussion.
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VR, I appreciate your knowledge and research, and the effort you put in to explain studies to patients. I respect your preference for not continuing the discussion yourself here.
A.A.
P.S. VR posted a helpful review on vitamin D trials in the Alternative forum, for those who are interested. It would be interesting to see a comparison trial between tamoxifen and vitamin D supplementation, to see which one produced the best results with the least adverse effects.
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AA all I can say is Rome wasn't built in a day
I agree with VR that you should perhaps include all comers in your questions and start a "treatment options" thread. It is clearly not just relevant to the stage 1 gals, it's relevant to everyone. Good luck, I hope you find the answer you are looking for.0 -
annicemd, this thread + VR's post about vitamin D under the Alternatives forum + mine about clinical trials under that forum provide that food for thought toward something better. Thanks -- A.A.
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Hi,
I was diagnoses at Stage one, grave one, invasive with tubular features. The cancer was less than 2mm. I had a bilateral mastectomy and a panel from my hospital evaluated my case and unanimously agreed not to recommend tamoxifen. My oncologist explained the benefit I would gain from taking tamoxifen is outweighed by the side effects.
I'm exercising a lot these day, and eating mounds of kale, trying to decrease my risk of recurrence. Still, in the back of my mind I worry I'm not doing enough. My dear friend just died of bc last month. She was diagnosed at stage 2b and 4 nodes were positive. She did lumpectomy, chemo and radiation, but declined tamoxifen. Before she died she wrote me stating she wished she had taken it. It's all so confusing.
My surgeon stated had I opted for a lumpectomy I would certainly be on tamoxifen.
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Newyear13...The NCCN guidelines say that for tumors that are less than .5cm with favorable characteristics, you can "consider" taking Tamoxifen...it is NOT "recommended." So the advice you received from the oncologist is following the NCCN guidelines. For some patients, the prognostics are so good, that the risks of taking Tamoxifen outweigh the benefits.
Glad you received such favorable prognostics. Good luck!
BTW... Tubular is the most favorable of "favorable rare" breast cancers!
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New year,
You have very favourable prognostics, so I don't think any treating team would recommend you have tamoxifen
Best wishes0
