Does anyone refuse hormone therapy altogether?
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Ladies -
Here is a late breaking bulletin: just got a phone call from my medical oncologist. The results of my Tamoxifen metabolism test have finally arrived - I am an "excellent metabolizer" - ergo, I will get my prescription filled tomorrow and take my very first Tamoxifen pill tomorrow evening . . .
Or are the mornings better? Must do some more research on that!
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Thanks for your response. I have checked out the "natural girls" a little bit. But I'm not real interested in doing a lot of diet stuff and my exercise is limited because of my orthopedic problems. I am 68 years old, will be 69 soon. I figure I have only so many years left anyway, I'm not going to make myself nuts over this.
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Britt, happy to hear that. Looking through the threads it seems like AM works better for some, PM for some, and some do better splitting it and taking 10 twice a day. I started out in the AM, then switched to PM and that worked better for me. You may need to experiment. good luck I'm routing for you
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kmmd -
Thanks so much for the good wishes! My Rx says 20 milligrams once per day - I think I'll try it at night since I take my Xanax in the morning. Will also discuss this with my med onco. I have also perused the threads - and it seems that the majority of side effects are hot flashes, joint aches and loss of libido - I think I can deal with that! Small prices to pay for now . . . and my med onco will monitor me with an endometrial biopsy and transvaginal ultrasound once a year, and blood tests every three months. Will keep you posted - have a great dayY0 -
I just read that drinking a cup of grape juice inhibits estrogen production. also, crimini mushrooms, baby portobellos, also reduce estrogen production by 50%. I found this in the June 29,2009 issue of Woman's World Weekly, an article titled Amazing New Health -boosting Superfoods. I am taking Tamoxifen, because I have a strong family background of BC and Ovarian cancer. My mom was 29 when she died of ovarian cancer. On my dad's side, his grandma died at 38 of BC and his aunt died at 33 of BC. I am doing everything I can do to prevent recurrence. I am waiting for the results of my genetic test for the BRAC genes.
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Cheyanne ~ I read your post yesterday, and it's been on my mind since then. I just wanted to say that doing a few things in lieu of an A/I are not all that difficult. It's not really a "special diet" you have to follow, but more like eliminating things that aren't healthy anyway (some types of fats, refined carbohydrates, etc.), and focusing on lots of fruits and vegetables, whole grains, legumes, etc. Besides those foods, some animal proteins may have hormones in them that we don't need, so it's a good idea to limit those. But it's nothing complicated or hard. I3C or DIM (estrogen modulating supplements) are inexpensive with no SE's. So taking one of those could be helpful. I'm not sure what your exercise limitations are, but doing something (walking, swimming, a treadmill, anything) for just 30 mins a day can significatntly reduce your risk of a recurrence.
Maybe I misread it, but your post sounded kind of defeated, and I just wanted to encourage you that there are things you can ease into doing that will be helpful, especially if you can't tolerate an A/I. Feel free to PM me if I can help you with any of this. The "natural girls" thread is very fast moving with some extremely knowledgeable women, so maybe wasn't the best introduction to some of the simple and healthy things you can do naturally if you're not doing an A/I.
Maria ~ That's great that you tested so well on metabolizing tamox! I know quite a few women who have absolutely no problems with it, so hopefully you will be in that class! Deanna
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No, I am not at all defeated! I just refuse to live my life as though something horrible is going to happen to me. Sorry, I don't feel that way at all. I was originally told that I am at low risk for recurrence to begin with, so I'm not going to borrow trouble. That's all.
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Those considering skipping hormonal therapy might like to consider the results of a study conducted by St. Luke's-Roosevelet Hospital Center in NY:
http://www.ncbi.nlm.nih.gov/pubmed/18809051
Local and distant recurrence increased 9% and 11% respectively in those patients were were tamoxifen noncompliant. No significant difference occurred in the relatively few patients who were chemotherapy and radiation noncompliant.
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Who was behind that study? Did they take into consideration of diet changes, exercise, and special supplements, to help lower estrogen the natural way? Everyone needs to do all the investigating they can, its a personal choice, and a very hard one. We are all in the same boat, just different ends. Please keep the pros, and cons coming. We all have a chance of recurrence, no matter which way we go. May God Bless
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Small world, that is exactly what I was going to comment. The problem with all of these studies is that they are one sided. They are either with the drug or without the drug, but no third blind comparison of lifestlye, diet, etc. How do we know that those who did better statistically did or did not make a lot of healthier choices? They did the same thing with putting arimidex on the market. After it showed good results for stage IV for tumors, which was great, they decided to compare it to tamox. They did not even complete the study, saying it showed "great improvement" and arimidex became the new drug of choice. They never even did an arimidex study comparing it's use to non users, or even better, to things like weight loss, exercise, diet, etc. Until they start to use these other preventative measures alongside the drugs in tests, I will not believe that the drug route is any better. Until drug companies are willing to run tests that might jeapardize their own lucrative results I will not believe that they really want to help us.
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You also have to keep in mind, that the stats on tamox are off because they put the ladies with DCIS into the numbers also, so of course tamox looked good..........not accurate at all
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And one more thing ( an issue close to my heart, which is close to my breast) My case of only 2% ER+. My pathology was not allowed in the studies so. I hve no advantage of all the trillions of dollars of research money. I am meeting with a alternative doctors and a new med onc and maybe even a endocrinologist.. I have 2 weeks to decide. YIKEES!!!!!
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Smallworld,
One of the most important things anyone needs to know when assessing the value of published research as it pertains to them personally is the baseline risk of those included in the study. For example, what were the tumor grades, tumor sizes, margin widths, ages and Her2 status of those 294 who did not follow through with prescribed tamoxifen? Were they pre or post menopausal? Did they have a lumpectomy or a mastectomy? Where any of those 294 included among those who also declined chemo and/or radiation and if so, what were their stats?? Did they have Oncotyping or some other genetic eval done on their tumors and if so, what were the scores?
The only information about this study I could locate (at least until I go into work tomorrow) is the abstract which offers no hint at the individuals statistics. All that's known about these women from reading the abstract or the news blurp is that they were probably ER+ ( but to what degree??) and that they had a recurrence. The full text of these published articles sometimes gives at least some of that missing information, but often they don't and possibly won't in this instance either. Without it, the intended message that non-compliance leaves one at increased risk is virtually meaningless to an individual hoping to use the information to make treatment decisions..
I'm someone who had a small, grade 1 invasive IDC/DCIS tumor resected with very wide margins and as previously stated many times, I declined tamoxifen, arimidex and radiation after lumpectomy. If the majority of those in this study had something other than what I had, then the fact that they had a recurrence without using tamoxifen is not relevant to my particular situation. On the other hand, if the majority of those in this study all had mostly small, low grade tumors with wide resections, then hearing that tamoxifen reduced the recurrence risk MIGHT make me stand up and take notice although it wouldn't necessarily change my decision regarding not taking it because I have other medical issues that make it somewhat risky to do so.
One of my biggest gripes about the way research for breast cancer is conducted is that they have the very annoying tendency to group dissimilars together and then formulate global recommendations for treatment based on the results obtained for this very heterogenous group. Oh sure, they might for example, use only those that are stage 1, node negative and ER+ in a hypothetical study and consider them similar... but stage 1, node negative, ER+ ( is it highly ER+ or just barely so?) can, and usually does, encompass a very heterogenous group of tumors.
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MarieKelly-Good points!
Bold-It is great you found an endocrinologist. I could not find one. Let us know what he/she says!
Mary22-Make sure you are closely monitored since tamox raises the risk of uterine cancer. Mushrooms are great protectants, but I read that grapefruit juice was a no no. Can't remember where though, drats!
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MK, there are so many variables between people. could they ever have a truly homogeneous group to test? We can assume that all of the non-compliant women who died were er positive and its pretty clear that statistically the non-compliant women had a significantly greater risk of recurrence. As a group, the compliant people do better.
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Yes grapefruit juice is a no no. It is right in the packet insert w/ tamoxifen. I was referring to Welch's Grape juice.
Yes my onc did warn me about uterine cancer risk as did my gyno. My gyno was reluctant to take my IUD out since it lowered that risk. Any abnormal bleeding, my gyno told me to get in to see her right away.
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Seabee
Interesting article. Thanks for posting the link
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Teild wrote:MK, there are so many variables between people. could they ever have a truly homogeneous group to test?
No, probably not 100% homogenous. But they can certainly do FAR better than mixing low grades in with high grades and node negatives with node positives because that kind of combination is a far cry from being anything even remotely homogenous...and that's how it's done not, only in this study but most others as well. I'm at work now, so I have access to the full text, but can't copy it here because it's by subscription.
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MarieKelly, I just sent you a PM
Debbie
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No one is safe from a recurrence, no one. So you can say that what happens to women with high grade or positive nodes or whatever doesn't apply to you, but the point is that tamoxifen is an effective drug backed up by science and if you choose not to take it when it has been recommended for you, you increase your risk of a recurrence. How much you increase that risk, who knows? Probably not so much if you had a tiny, low grade tumor. Probably by a great deal if your tumor was more advanced and highly er+. I think this is important information to have out there and I am not surprised by it at all. Tamoxifen has increased survival for women with breast cancer. I personally know a woman who is stage IV and had her mets controlled, stable, by taking tamoxifen for close to ten years.
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Though I would like to see more studies devoted to specific subtypes of BC, I doubt that having a totally homogenous group (which is difficult to get in any numbers because of the many variables involved in BC) would make this kind of study more useful. What these women had in common is that they either took their pills or they didn't, and the ones who didn't had a substantially higher rate of recurrence. Since they just happened to be treated where their medical records were accessible, both those who complied and those who didn't were probably a representative cross section of women whose doctors recommend tamoxifen, though the summary does mention that those who were tamox noncompliant tended to be younger. The fact that tamox is prescribed for pre-menopausal women may have something to do with that. Any other obvious trends should have been noted.
What this means for an individual is the same as what the statistics for any treatment method indicate--that having surgery, radiation, chemotherapy, or hormonal therapy, IF your specific situation calls for them, will improve your chances of survival. Deciding whether your specific situation calls for them can be difficult, like the case originally posed in this thread. It becomes yet another matter of weighing risk against possible benefit.
I refused chemo because, in my case, it appeared to be all risk and no benefit. I am presently taking Femara with no side effects.
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Again i would like to reiterate the fact that we do not have a shortage of women with BC! How difficult is it to compile information. This is insane. There is so much money available and so many cases and although cancer is unique it is not that complicated. I would love to benefit and have our children benefit from the compilation.
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It was a retrospective database study from a single institution, there will be limitations to what the authors could access. The tamox "noncompliant" patients were younger, more often white, had larger tumor size (2.4 vs. 1.8 cm ), had a mastectomy (therefore no radiation). They accounted for tumor grade, lymph node involvement, and chemo and radiation therapy prior to the recommendation of tamoxifen therapy. It must also be taken into account that the database used data on those treated from 1988-2002. Chemotherapy regimens more recently would be different and the impact of diet, excercise etc would not have been known or encouraged to the extent that it is now. Nonetheless within its limitations it was well done and I would think of it again if I ever decided not to take my Tamox.
Re: studies of arimidex vs. no hormonal therapy as opposed to arimidex vs. tamox. Doubt at that time you could have gotten an arimidex vs. no hormonal therapy study through an IRB. Tamox was too much the standard of care.
There are a lot of women on this thread who have done a lot of research. Seems a shame not to put it to greater use. All IRB's at academic centers ask for volunteers from the local community. Many of the foundations giving out research funds (Komen comes to mind) ask for grants to be reviewed by patient advocates and recommendations given for which will be funded. I think it would be wonderful if those who are frustrated that so much of medicine is driven by standard of care, or by which studies get funded and which never get off the ground due to lack of funding had a chance to get involved in the process. Maybe some of you already are?
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Kmmd: what would you think of a case like mine. I am so lost in this decision making process. I have my degree as a PA. It does not help at all. I am asking other people to tell me what they would do and why. I know that it is my opinion that counts but I so need others opinions to help me with the information I need to make up my own mind.
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Bold, I think the most qualified person to ask about Tamox, if that is what you're getting at, is your Onc. Just thought I'd answer some questions others had about the article because I read through it. (And put a suggestion in regarding the need for survivor advocates on IRB's and research boards because there is some serious talent and knowledge on these threads). If your work as a PA isn't in the area of breast cancer I wouldn't expect it to help you with decision making, breast cancer is a highly specialized field and information can be outdated within 6 months.
Like everything else we go through with this cancer these are all such personal decisions. Personally I'm thrilled that the Tamox seems to be working for me, just wish part of the reason we knew that wasn't the fact that I have non stop hotflashes.
3 cm cancer? Yes, truthfully I'd be trying hard to make the Tamox work. However, I also plan on using local estrogen if I have trouble with vaginal atrophy, and I know some women think that is nuts and not worth the possible increased risk associated with it. I think a good Onc will be open and happy you ask questions, including some of the differing opinions on Tamox that you find here. Most physicians want their patients to go through their treatments with true "informed consent." That includes knowing both sides of the argument, and understanding the alternatives. If they understand them well they will be fine with us asking them about them. I do think as long as it isn't done out of fear or as a snap decision that most people make decisions that are right for them. I don't trust anyone who is rabidly against traditional medicine anymore then I trust a doctor that refuses to believe there are benefits to alternative approaches. Sorry, didn't intend to make this so long or preachy. So Bold, please don't think my opinion is worth much, yours and your Onc's are worth so much more. My personal advice would be to embrace a lot of what you've heard here about maintaining a normal weight and exercising--and give the Tamox a good serious try.You are welcome to PM me if you want to just bounce things off someone some more
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About the statistics w/ the BRCA gene, has anyone seen any info about a cancer gene in general? My uncle had cancer of the esophagaus and he said his onc said he still had the cancer gene in his blood? His grandma and aunt both died of bc at very young ages and another aunt had a brain tumor at a young age. He had cancer and his sister had melamona and precaner polyps removed from her colon. Just rambling on some thoughts, sorry to jump off the subject!
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kmmd wrote: "It was a retrospective database study from a single institution, there will be limitations to what the authors could access."
There were NO limitations in this study that would have prevented the authors from reporting GRADE SPECIFIC 5 year local and distant recurrence rates. They had the information (***see below). The only obstacle to doing so was their decision not to do it. Instead, they presented an "all patients" conclusion which grouped all grades together and thus tells nothing of value those of us who are grade 1 with an already low 5 year recurrence rate. Not to mention the fact that tamoxifen compliant arm contained a considerably higher percentage of grade 1's (12% vs 7%), so could this alone, (remember, grade 1 have very low 5 year recurrence risk) have tipped the scales for less recurrences in that group ? I don't know because there's no way to make that determination based on an "all patients" recurrence conclusion.
So for me as a grade 1 who might be trying to decide from reading this study, and others like it, whether or not tamoxifen provides some personal benefit, this was a "bad" study". For those who are intermediate grade or higher (since 93% of these patients were), it might be food for thought..
***The 287 tamoxifen noncompliant patients in this study contained 7% who were well differentiated (grade 1), 67% who were moderately differentiated (grade 2) and 26% poorly differentiated (grade 3). In contrast, the 494 in the tamoxifen compliant group was comprised of 12% well differentiated, 63% moderately differentiated and 25% poorly differentiated. .
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Good gravy, not intending to get in a tamox article battle. Your stats above are correct, the authors reported them in the table and that it didn't reach statistical significance. I tried to answer a few questions for those who said they couldn't access the article, happy you could and that you could get to what you wanted. As I mentioned above I think this is all a very personal question. Each to his own
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WOW' That was great research. I do have other question' I was told the risk of recurrence was about the stage, not the grade? The grade was how fast it grew, and the stage was how large the tumor was. Thanks for doing all the hard work.
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Just did some more research myself. Google, lifeabc-risk of breast cancer recurrence. It has a wake-up call for us all.
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