Stage 1, grade 1 and pre-menopausal
Comments
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Mepic..you are missing the point. With the additional information of the Oncotype DX score of 15, your prognostics based on the test become less favorable if you choose not to take Tamoxifen. Because the test looks specifically at the genetics of your tumor, the prognostics of the test usurp the subjective favorable pathology report. Recall, IF you didn't have the Oncotype DX test, according to the NCCN guidelines, you would not only be recommended Tamoxifen, but there would also be a discussion about the possible need for chemotherapy. Take a closer look at the guidelines. On one hand you are accepting of the Oncotype DX test that supports the lack of need for chemo, but you dismiss the second purpose of the Oncotype DX test which serves to inform you of how much benefit you can potentially derive from endocrine therapy. Now as I said earlier, everyone has their own risk tolerance and can choose what therapy seems right for them. But don't assume that your prognostics are as favorable as you think they are based on your pathology report. You do have excellent prognostics based on the report. But when you factor in your OncotypeDX score and your desire not to do endocrine therapy, you then will be exposing yourself to a much greater chance of distant recurrence. I agree we don't know exactly who might recurr, and everyone needs to decide what's best for themselves. We also know that by the 5th year following diagnosis Tamoxifen compliance is only 51%. So, lack of compliance is an issue probably due to side effects. But the evidence is clear. Tamoxifen improves mortality for most ER positive patients. The NCCN guidelines are also clear. Please reread the NCCN guidelines more carefully and then make your decision...
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My impression is that efficacy of treatment is only part of the rationale for making a choice about doing or not doing any particular treatment. Another significant part of the rationale is the question of SE's. Oncotype Dx does not provide any information about SE's.
Unfortunately, SE's are generally mentioned to the newly diagnosed only in passing (if at all), as if they are of little to no concern. Clearly in this instance they are of clear concern to the person making the decision about treatment, although there is negligible to minute acknowledgement of that concern by anyone else.
Too bad there is no commercial test that checks the genetic basis for developing SE's, so that there would be accountability for them, too.
A.A.
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Vor/Annice: (or whomever is knowledgeable in this)
So, forgive my confusion...how exactly does the Her2- (negative) OR Her2+ (positive) status come into play here w/ hormone therapy (and w/ the Onco type)? I read about it a while ago..but forget & wasn't ever really clear on it--thanks!!!
*I believe my OS said I didn't need the Onco. test in MY situation, so they didn't do it...although, perhaps I should ask the 2nd opinion doc. on the 20th? What do ya think?
Thanks!
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So,about tamoxifen... My MO told me that after 2 years I could come off to have a baby if I wanted, and that the benefits of being pregnant are the same as being on tamoxifen. I'm assuming after the imaginary child I would go back on to complete my 5 or 10 years. Do ay of you have any opinions on the validity of that?
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http://www.nytimes.com/2009/12/15/health/15well.html?_r=0
Interesting article about fear of tamoxifen attached .
Also appropriate for my fear of Zoladex.....
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Sorry Kiwi.....
Cant answer your question .....
Wish i could help !
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Pooh...The article that you mention refers to taking a medication for PREVENTION of getting a first time illness. In fact, there's been a more recent study published in January of 2013, suggesting for the FIRST TIME, that high risk patients of getting breast cancer, consider taking Tamoxifen. That's a huge difference from the recommendations made for patients who have ALREADY been diagnosed. But the psychological dynamics of choosing to decline or take a drug is certainly worth exploring. I often ask myself why some people who are truly at low risk of developing heart disease are hell bent on taking a statin that can cause major life-threatening side effects, such as rhabdomyloysis.
Regarding AA's point about finding out if there is a way to determine ahead of time, using genetics, to find out if a person could tolerate a medication is a great idea. If you read Dr. Topol's book, you will notice that researchers are beginning to look at genetic markers to see which patients are better able to metabolize certain drugs. In his book he discusses the cardiac drug Plavix. There is now a genetic test that is available to see how well a patient can metabolize the drug. Recall that with Tamoxifen there is the controversial CYP2D6 test to also screen patients for how well they can metabolize Tamoxifen. Since initial research of CYP2D6 became known in 2005, it has become equally popular and controversial to researchers. The NCCN guidelines does NOT at this time recommend the test, although this past year there's been new research published that leaves the door open to perhaps one day, changing the NCCN recommendation. I think studying the genetics of whether a person can metabolize a drug is more concrete to study than the side effects of a medication, since side effects is more subjective and therefore harder to measure. But, I have no doubt that studying side effects will one day be studied on the genetic level. I think it is important. In fact, it seems that more and more experimental drugs ARE NOT making it to the market because of side effects. It would be nice if using genetics, pharmaceutical companies can quickly gauge the side effects of a potential medication BEFORE millions of dollars are spent on putting people into clinical trials to study the side effects. Dr. Topol also discusses this in his book as well. He sees a day when smart phones will be used to gauge side effects and that information will be shared more quickly with physicians and researchers. There was a study a month or two ago that said Dr. Google was exposing medication side effects more quickly than the FDA! Patients have taken to the computer and are now able to investigate their side effects. Google accumulates all of these "hits" and can quickly see the patterns....Fascinating.
Violet...regarding your OS telling you that s/he didn't think you needed the OncotypeDX test. According to the NCCN guidelines, if your tumor was less than .5cm and had favorable characteristics, then the NCCN guidelines DO NOT recommend the test. If it was larger than .5cm they recommend the test. The test can "validate" the pathology report. Or, it can pick up more clues to the specific characteristics of your tumor on a genetic level and tell you with more precision what your overall risk of distant recurrence is. Two weeks ago, I had the pleasure of visiting several breast cancer researchers at Sloan Kettering. They recently set up a "rare" rare breast cancer genetics lab. They are devoting themselves to studying rare breast cancers. With rare breast cancers, like mine, they recommend that several pathologists look at the specimens. Why? Because pathology reports are VERY subjective. Quite often you will see here on the discussion board that patients will be told they have a Grade 1 tumor, only to find out at a later date that another pathologist report classified their tumor as Grade 2. Using the OncotypeDX test, looking at the genetics of the tumor can only validate the pathologist's report or question it's veracity.
With regard to HER 2... the pathologist tests the tumor to see if it's positive or negative. The OncotypeDX test also tests for that. Again, that is another way to confirm the pathologist's report. When I met with the Sloan Kettering researchers, they had much to say about pathology reports. They said if you had 5 pathologists look at a tumor, you'd get 5 different opinions. They STRONGLY believe in the importance of studying the genetics of each tumor. So, IMHO, your OS should instead be advocating the OncotypeDX test. Knowledge is power.
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Pooh and VR,
Thanks for the thoughtfull responses to my post. There is some difference in risk between prevention of initial occurrence and prevention of recurrence but I think posting the article without comment has its merits too.
From the standpoint of personally being one of those patients who elected to not take--or limit--the duration of some drugs as part of my treatment, I will contribute some reflections.
I couldn't have a better PCP, yet I chose not to follow his recommendations for endocrine therapy. Why?
My PCP has an extremely busy practice. I used my personal time and money for multiple appointments with my PCP to provide awareness to him of the SE of dyspareunia and loss of gender that I experienced within 2 weeks of starting tamoxifen. (Whether or not it was due to the cumulative effect of chemotherapy and tamoxifen does not seem to matter to anyone since no research appears to have been done to determine whether that is a biased assumption or not, which includes leaving me to wonder just how relevant science thinks SE's are....) I also specifically raised the same concerns with my oncologist.
I am acutely aware that despite making it clear repeatedly in person to my PCP and my onc that these are not minor issues to ME, those concerns never got past their examination room and onto the medical record. If they are not transferred to the medical record, they fail to exist for medical analysis or treatment. I don't think my experience is uncommon among patients. I think patients are intelligent enough to recognize that the incidence of SE's (and especially SE's that have no quick, simple solution) is much higher than is medically acknowledged, and much easier for providers to dismiss than for patients to dismiss. So.... it is not a lack of intelligence on the part of the patient to avoid or discontinue recommended treatment, it is a mark of the lack of intelligence on the part of medical providers, by not respecting the patient's perspectives and issues. These SEs are under-reported in the first place because patients know their providers are so frequently not interested enough to value them, and are frequently not part of the medically documented record when they are reported in the second place.
It is an issue of credibility and bias that does not favor the patient.
A.A.
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Thank you AnniceMD for your post yesterday. The comments from Stage IV women were alarming and eye-opening. After reading them, I'm newly committed to staying on Tamoxifen. I've only been on it for 2 weeks (started with 1/2 pill, then 3/4 pill, and now starting full pill tonight), and so far it's not too bad -- just heartburn (which I'm treating with MO-approved OTC meds), some night sweats, and the occassional bad mood. Unless things get much worse, I think I can handle it. QOL is very important to me, but so is keeping that BC monster from coming back.
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Violet when I went to find the stage IV roll call thread that I read back in 2011 it now says for stage IV only and others please respect privacy, which i am sure it did not say when I read it in 2011. So I don't thin I should post the thread link sorry. If you choose to go to the stage IV thread and search stage IV roll call that's up to you!
Gosarelin/Lupron/ zoladex causing ovarian suppression ( OS ) are drugs which induce a reversible chemical menopause0 -
Kiwi I don't know for sure but I have heard of others getting the same recommendation for having a baby. Tamoxifen for 2 years have a baby then back on tamoxifen to fulfill the 5 or 10 years the MO wants you to be on. As far as pregnancy being as good as tamoxifen I don't know maybe Annice can chime in on that
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Just wanted to say THANK YOU to all of the insightful information that everyone provides on this thread. I find it fascinating, and in fact, haven't been able to tear myself away from my computer to finish a project that needs to get done tonight
. The genetic testing for SE's would be remarkable. A crystal ball would be so nice right now . . . my age (40) is what ultimately prompted me to embark on the tamoxifen/Zoladex (goserelin)/Zometa (zoledronic acid) treatment combination. (Well, that, and a strong opinion from a MO at a breast cancer hospital.) I decided that I could tolerate the potential SE's and if not, I would stop everything but the tamoxifen.0 -
Hi min937, It is exceptionally good to have very dedicated and knowledgeable people on board here so that everyone has the chance to sift through it and make some better sense of it all.
Here's one more bit for everyone to consider:
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Hi Min 937 ,
I plan on doing the same as you but am waiting for my onco test ...should be available by next week .
Good luck ! Hoping side effects are tolerable !!!!
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Thank you Alaska for the link and your post about doctors and SE. I have definitely noticed that my doctors don't want to hear about my sensitivity to drugs and that they brush off my concerns very quickly. Tellingly it was my BS assistant who said under her breath to me, "Oh yes there ARE a lot of SE". I found an oncologist in Newport Beach who also specializes in endocrine and metabolism and I was so excited to switch to him but it turns out he does not take my insurance
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mepic,
I think you have been given very real information and interpretation from others here as well to help you understand your choices and to help you make decisions, whatever the outcome may be, including continuing to evaluate your choice or change it. I hope you keep an open mind and continue to watch for research that may be applicable to you.
I was 52 at time of treatment. I did both chemo and some tamoxifen as a person with stage I, grade 3, 1.6 cm tumor that was known to me to be HR positive. There is no way to know whether the treatmetn helped me to stay recurrence-free or not. There was no Oncotype Dx or anything like it at the time I was diagnosed to help me or to confuse matters for me. My doctors chose not to mention my HER2 positive status to me at the time, even though they performed the testing at my expense and relied upon it as part of their decision-making process. I do not feel comfortable with that kind of thinking in my behalf, and I do share my experience as just one single patient here because I have no way of knowing how common or uncommon that practice is now among medical providers. I have no doubt that my providers believe they were doing everything they could in my behalf. No one is perfect, and I don't expect them to be or to have the perfect answer for our situations.
For some it will be possible to go ahead with treatment to see what it is like and whether they feel they can handle it. In my particular case, my care providers failed to be truthful or to provide the advance counseling for me about possible SE's that were known at time of treatment. In my case, the SE has turned out to be irrevocable even though I stuck it out on tamoxifen for 1 3/4 yrs and even though I reduced my dosage for the final 3/4 year. I am just guessing but I think that permanence of SE could be due to my age at the time.
I wish you could see the Newport Beach doctor for additional specialized guidance, even if just for a second opinion. Thanks for mentioning that. It is encouraging to know there are some out there to help us.
A.A.
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Annice or anyone else ,
Assuming my Onco type score is low .....If I were to start the Zoldex /tamox treatment plan in June .......and the SOFT trial preliminary results were made available in Dec and concluded that zoladex was of no signifiant added benefit......would you say that my period would come back once i stopped the Zoladex and all would back to normal re estrogen levels etc Or would there be a possibility of irreversable damage in that 6 month period ???
p.s Still waiting for the onco type test results to come back .(Should be avilable next week ) .
Thank-you everyone..this is a great thread for the premenopausal gals.
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Pooh the younger your are the more likely your periods are to come back but no one knows until they come off treatment. I am wondering the exact same thing
The tamoxifen would only trigger menopause if you were heading that way anyway and so it's individual and unpredictable0 -
Kiwi there are not enough data to give you any firm advice on this. Conceiving after 2 years tamoxifen is an empirical approach. I don't understand the comment that the pregnancy will give the same effects as tamoxifen? The pregnancy would elevate your estrogen levels significantly. It would be logical to restart tamox after pregnancy I think but I am not an expert on this and numbers of women who have used this approach are too small i think to give you robust info so it's an individual approach that you follow with guidance from your team as to when it's safe to become pregnant and/or restart treatment after pregnancy. There are some pregnancy threads on this website that you might find usefull
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Thank-you annice
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Well. I'm not sure as to the the exact REASON, be it peri-menopause OR coming off the birth control pill 3-4 weeks ago, OR BOTH...
BUT, boy am I have HOT FLASHES for the 1st time in my life! OMGorsh! I'm usually freezing cold 24-7, so when *I* get these hot flashes, I then get immediately cold right after. They are starting to wake me up at night or if I try & nap in the day. I have had night sweats for sev. years now, but I'm pretty certain those are from taking Celexa, then Lexapro (which I'm still on), since I never had them before taking anti-depressants.
These Hot Flushes/Flashes are NO FUN...
I'm 471/2...not even sure IF I should try anything to help w/ them YET since I'm not sure if they'll be sticking around (probably, huh?)...could be my body going whack-o since coming off the BC pill...I have several day & night...
Hmmm...?
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P.S. - Still NO period yet (YAY!) after coming off the BC Pill, (was on it continuously for last 10 years due to horrible periods/fibroids--perm. off it cuz of breast cancer DX)...maybe I am in the beginnings of menopause. But, my Mum didn't start M. until 50-53.
I did get my 1st period @ 11 1/2 years old though...so perhaps the Time has come...
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Violet, I have night sweats too. But didn't get them until Tamoxifen. Was on Celexa for a few months before the Tamoxifen. The Tamoxifen has started to lengthen the time between my periods and make the shorter.
TarheelMichelle/Ronda, nice to see you hear. You don't have to answer this...but did you have an Oncotype test done? I am always fearful of mets since my tumor was there about a year before I found it.
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A.A. - I apologize if I missed this somewhere, but if you don't mind me asking, what were the irreversible SE's that you experienced after tamoxifen?
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min937,
The main irrevocable SE's that occurred within 2 weeks of starting tamoxifen for me were severe dyspareunia (painful intercourse, not just dryness), complete lack of pleasurable sensation in the genitals and breasts and facial lips, and loss of gender.
Over time I've gotten a little more accustomed to feeling neither male nor female, but it still feels quite bizarre in all kinds of ways... big or little. It literally feels like being a 3-year-old in an adult woman's body. I guess that is the closest I can get to describing it. There was no advance counseling or information or reason for me to know that by doing the treatment, I would be stuck in limbo.
With estrogen high and still very much premenopausal just before treatment, I was having a great time with intimacy with my spouse of 30 years at that time, now 40 years. We cope the best we can. A main affect has been upon motivation. It is surprising just how much of what humans want to do each day involves the relationship between males and females.
In addition there have been the normal range of menopausal changes that come with aging as well as the permanent rapid cumulative changes from chemotherapy (such as aspects of chemobrain, very faint eyebrows, almost no eyelashes, hair that is thinning a bit and has no body, much faster weight gain, flabby skin, dry joints, dry eyes, dry ears, dry skin, etc).
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Thanks Alaska, I am going to a different MO than I saw initially because the first one I saw my husband and I left not having any faith that this was the person to continue treating with. I will be seeing another MO that came highly recommended who, though may not be as "nice" as the first one was, I don't want nice, I want competent. I do plan thereafter on getting a second opinion from the MO in NB who also specializes in metabolism, endocrine and hemotalogy. With my Hashimoto's disease and sensitivity to meds if there was going to be an MO I would trust with helping me make decisions about my treatment it would have been this one who has these additional specialties. I'm not sure if other MO take the time to see if a patient can metabolize adjuvent meds or if they just all hand out a one-size-fits-all dosage of tamoxifen. It seems odd to me that someone short and petite would get the same dosage as someone really tall and who is much heavier in weight. Or take alcohol, for example. Some people can drink a six-pack of beer and carry themselves as if they didn't drink at all. If I drank a six-pack of beer I'd be throwing up or passed out or at the least so congested it would be hard to breath. This is why an MO who is an endocrine specialist who also specializes in metabolism seemed like finding treasure to me. After my second opinion I may look into seeing if I can pay out of pocket for him but get any testing he prescribes paid through my insurance. I can't wrap my mind around something. While it is true that early stage cancers can recur and come back stage IV, for years several studies found that the patients most likely to have recurrence were those with bigger tumors, grade 3, node positive, and more recently Her+ (and I say that having a good friend who was diagnosed at 36 with triple negative BC and she is alive and disease free 12 years later). I think I read that the Oncotype dx test should be used by doctors alongside other prognostic factors, which I believe are tumor size, grade, node status, etc. Does this mean someone else who has a much larger tumor than I, positive nodes and/or a higher grade could also have a score of 15 on the Oncotype dx? If so, are MO now discounting what they have thought for years about those most likely to recur and going solely on Oncotype dx scores or do they take the time to see the particulars of someone's pathology report alongside the Oncotype dx scores (like I believe I read they are supposed to). I just read a post where someone had really favorable prognosis per pathology report (better than mine), and a pretty low Oncotype dx score (under 10) and she was upset because her doctor was being fatalistic about her not wanting to take Tamoxifen. At best it seems like lazy medicine practice to not look at the details of each patient and just have a prescription ready to hand out with no consideration of the loss of QOL they may be prescribing given how small the benefit may be for that patient. Or sadly, at best it appears that they just really don't know how to treat this beast so we are all just lab rats while they figure it out.
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I am sorry Alaska, I read your last post after I'd written my last post. I just wanted to say how sorry I was about your SE, that is just rotten that you (and all of us) aren't warned of SE like this, especially if it is permanent and after such a short time on the medication. This is why when my MO casually brushed aside my fears and. said I could try taking Tamoxifen and stop if I get severe SE I can't help but feel like I am being offered a poison apple and told "just take one bite". Then my BS said her friend had 2 positive nodes and took Tamoxifen and is still here and I am thinking well if I had 2 positive nodes I would take it too but I don't....that's the point. Treat my early stage cancer with consideration of my health concerns and particular prognosis. Is that too much to ask? Right now I feel great (better than before dx I think because of the DIM). For the person who asked what DIM was please do a search as there are good descriptions of it over on the natural boards.
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mepic,
I do find it encouraging that there is such a person with a combination of knowledge from oncology and endocrinology and metabolism, but I'm still cautious... and I would want to actually hear some perspectives from that person that reflect significant awareness and consideration on their part about the endocrine and metabolic relationships to breast cancer in terms of breast cancer treatment.... and not just end up with a generalized repeat of the standard CYA onc recommendations. Given the lack of insurance coverage I know it is hard to put out the resources for that extra opinion plus any labs, yet it does seem like a good bet.
I understand your question and puzzlement about larger tumors vs tiny ones, etc. By volume there are comparatively fewer small tumors that would pose the same level of threat as the "bigger" tumors.
Where I have strong reservations about subjecting "smaller" tumors that demonstrate better pathology but that have darker genetic indicators to the same treatment as "larger" tumors, is that by subjecting a much broader number of total patients to a stronger level of treatment, the more patients there are that are then subject to a wider range of what serious complications exist that any patients can have from the application of more significant treatment. I "get it" that by subjecting so many more patients to more extensive treatment there may be a few more patients who don't recur, but for each tiny tumor with darker genetic characteristics that gets more extensive treatment, there still isn't recognition or "counting" of the resulting larger number of patients that then end up at much higher risk for recurrence, for example, from such things as metabolic reasons due to treatment. I don't see any indication that the features they are using at present to recommend stronger treatments for a generally less at-risk group of very early breast cancer patients include calculating the metabolic after-effects of treatment, and the resulting higher risk for the entire group of all patients who are treated, into the balance of who benefits vs who loses. To me, the likelihood exists that even back when the line they drew was to treat tumors of 1 cm or larger with more extensive treatment, they were not including any consideration for the metabolic changes that increase recurrence risk that occur due to treatment, among patients that otherwise would not have recurred. But that is just my own personal take on it.
From the article I posted about the skewing of Oncotype Dx:
Another oncologist observed that breast cancer treatment seems to inherently promote metabolic syndrome, with its pear-shaped body habitus. "If my breast cancer patients don’t have metabolic syndrome before they start treatment, they often seem to afterwards."
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mepic,
It means a lot to me that you (and probably others) "get it" that there is an important amount of harm done through deliberate omission of pertinent information due to provider bias. The control and withholding of information under the pretense of doing it "in the best interests of the patient" is to me a slippery slope. What may not seem very significant to a provider may in fact be very significant to the person who is supposedly being given a chance to make a meaningful decision about treatment.
There are patients who are told unfavorable or difficult information who don't "hear" it even though they have been told, just like there are providers who fail to mention the range of SE's and who operate under the philosphy that the less patients are told, the easier it is for everyone. Too often, patients don't know what to ask, so they don't know what they aren't being told that they would actually want to know. The example of "try it and see how you do with it" without expressly indicating that some SE's may not be temporary for some patients is just one of those "omissions".
A.A.
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A.A. - My goodness! I am so sorry you have serious permanent SE's from "treatment"/Tamoxifen &/or a combination of treatments! I've never heard of this severe type of sexual consequence happening--how common is it? Has anyone told you? Truly scary & sad for you
. I have heard of people losing their hearing & vision (wondering how common or rare that is!)--sometimes it comes back once they discontinue Tamoxifen, sometimes not.How devestating for you...truly. Forgive me, but what do you mean by losing your gender...? The totality of the sexual consequences/effects? And WHAT in the hell have the docs told you about it since it happened? Did they believe it was from T.? Are there other cases like YOU? What a nightmare.
I do sure hope I get to meet you when you come my way!
Bless Your Sox!
V.
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