Does anyone refuse hormone therapy altogether?
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sorry Britt, sarabhealed is right, you don't have to take the drugs, I refused tamox, taking DIM, and a host of other supplements and having my hormones monitored by a naturopathic MD, however I don't know what I would have done if I had a larger tumor, node involvement etc, I have gone over and over in my head what I would do, and I think I would have chosen chemo over taking a flippin pill for 5 years, the frustrating part I think is that there are so few options, just the normal standard of care. I guess what I am trying to say, badly I think! is to do what feels right to you, don't feel bullied into doing anything you don't want to do, quality of life IS a big deal, and like many women refusing hormone therapy, you will know if your heart, with a sense of peace that you made the right choice, whatever that might be.
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Hi Maria (Britt) ~ Member makes a really good point. As pro-natural as I am, the fact that you haven't had chemo and are premenopausal (so lots of estrogen still circulating) would be concerning to me, too. In my case, for example, I had chemo, and I'm also post menopausal, so don't have nearly as much estrogen to try to modulate naturally.
In a way it's a shame they don't lay out every option at the get go, so that you will know how one decision may impact future ones. On the other hand, I guess there's only so much we can absorb at one time, and the possible negatives about Tamox & the A/Is are never talked about early in the game because it's considered a given that we'll be on one or the other. Deanna
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It's really interesting how different people can be from one another. Fairy49, you said you don't know what you would have done if you'd had a larger tumor with node involvement, that you "think I would have chosen chemo over taking a flippin pill for 5 years."
Well, I had a larger tumor (Tamox has made it smaller), plus node involvement, plus mets - and I was positively giddy with relief when my oncologist recommended going straight to Tamoxifen without doing chemo first. I have a highly estrogen-positive cancer and already had my bone mets at initial diagnosis, so for me, Tamoxifen was more likely to benefit me.
And it has. My tumor has been smaller at each visit. I have had no side effects except for the occasional garden-variety hot flash.
Before I was diagnosed, I was already taking a thyroid pill every morning. (Before the thyroid prescription, I too had loathed the idea of taking a pill every day for the rest of my life, but I had my doctor show me the trend of the thyroid test results in my chart over the years, and the numbers convinced me). So now I just take the Tamoxifen pill right along with the Synthroid pill.
That anybody would choose to deal with hair loss, nausea, fatigue, and all the rest over 15 seconds each day of swallowing a pill is a wonderment to me. It seems impossibly brave, that you would go through all that in order to get it over with. Please understand that I am not disrespecting your preference - just sort of boggled that you'd pick what I most feared and was most relieved I didn't have to do.
Of course, because I am stage IV, I will never have it all over with - but my onc has found a treatment that is working for me so far, so I feel pretty lucky.
By the way, I am doing the complementary stuff, too - diet, exercise, supplements. I figure anything that might help keep me around long enough to hold a grandbaby someday is worth a shot.
Blessings to all of you, no matter what treatment options you choose.
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God Bless you Anne--I'm so glad that the tamoxifen has had such a positive impact in shrinking the tumor. Thank you for sharing your story--you are in my prayers tonight.
Sara
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This thread is hot!!! Just out of curiosity how positive ER are we talking. The amount of receptors is an important part of any decision making process. If you have 20% or more than your approach whether holistic or hormonal should be more aggressive in my opinion, I have only a few weeks to decide on my treatment plan. Hi vivre, glad you are still so passionate.
My dilemma is that I am only 2% ER+. I have an aggressive grade 3 her2+ cancer. My tumor was 3.3cm.I had clear margins and 1 single cell micro met considered node neg.(whew). I have completed chemo and 1/2 way through rads. My onc said OK to no hormone therapy then changed her mind and now says to do it and it will improve my survival by like 13%. HUH? Heres the thing the Dr's all use adjuvant on line. The information requested is so flipping basic that they ask for grade, size and ER status, PERIOD!!!! not pre or post menopausal or % ER. Further more in all the studies I have been able to find they would not let people in the study that were less than 20% positive so how are we to know if we would benefit or not. This one size fits all stuff really sucks. Can we not afford to do test on specific pathologies for god sake! They certainly are not in need of women with breast cancer. It seems that it is everywhere 1 in 8. I do not want to do a drug that would not benefit me. I am sure that you all can see why this is so hard. I also want to do all I can to avoid any recurrence or new primary or heaven forbid Mets. It scary! One thing is that taking the holistic route is more work. You have to do the exercise, eat correctly and take your supplements. Taking a pill from your doctor is a lot easier and you are not responsible. I should say that even if I did do Al's I would diet and exercise they do not have to be exclusive of each other. Its 2:30 in the morning. I should be sleeping. I have a hard time shutting down my mind these days. I may be short of breath but I am long winded. Good night lovely ladies.
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Maria, i suggest you ask your onc for the stats on survival for your type of cancer with and without tamoxifen. That might make the decision more clear.
I stick by my original advice to you. I've been around these boards long enough to remember FighterLu, a really wonderful woman. She had a stage I cancer and was afraid of chemo so although she did some chemo, she cut back considerably on her onc's recommendation. Eventually she developed mets and died. The lesson she presented to the women on these boards is that you hit the beast early and with force while you still have the upper hand.
My concern is that this thread is sparking fears of tamoxifen and convincing women not to even try it. I have been on tamoxifen for over 4 years. After some initial side effects I look and feel great. I am thinner and in better shape than when I started. Not everyone has a rough time and many women who do initially ride it out.
I don't believe diet and exercise alone will prevent a recurrence. I've been a vegetarian and physically fit my entire adult life and yet I still got cancer. Diet and exercise are important but not sufficient.
Maria, your cancer was on the move. I think you need some sort of systemic treatment.
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Britt, we started here about the same time, you know that always makes us feel like we almost know each other and care so much about each other. Was so happy for you when your oncotype came back low and you didn't have to take the chemo in the thread you started. I think you made a good decision there. I know the numbers in the study supporting oncotype in lymph node positive women are low and it can't be used as standard of care, but, with micrometastatic disease and your gut instinct in tune with your oncotype score, that decidison makes a lot of sense. But, I have to say, when Fairy's knee jerk reaction is take the pill, you need to give some thought to this. (Fairy, always read your posts, learn a lot). Micrometastatic disease is still lymph node disease. I know people worry about the one size fits all use of hormonal therapy, but geez, its the best we have to go on right now and standard of care shouldn't be a bad word. It's standard of care because that's the best they can do for us with the data they have so far. That's the most you can ask of anyone. Yes, sometimes future results mean changing standard of care. That's why we need more research. And you're talking to someone who almost died on chemo getting that standard of care. And I'd make the same decision again with the info I had at the time. (DH now says he wouldn't take chemo no matter what anyone told him, we all make our own decisions)
Brit, sometimes complimentary means just that, in addition to. Please give it some more thought. Hugs to you.
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Oh no!
It matters how ER/PR receptive you are?
Mine is 90% & 80%...is this good or bad in deciding a treatment.
PLEASE do not yell at me for asking this question. BUT, at my age (43) removing the ovaries, (besides bone loss & menopause) is different than this drug how??
I am new but from what I have read the type of cancer that OP has is VERY rare & VERY slow growing & non aggressive. Am I incorrect?
edited for confusion between OP & Brit. Sorry.
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Dawnbelle: That's good. The more positive the better, but I did see some publicity from the recent ASCO meetings that any ER+ even if low people responded to the drugs.
re: ovary question, I'm struggling with the same thing right now. My Onc told me that ovaries do more then just estrogen production and we had to consider how hard being slammed into surgical menopause would be. I wasn't inclined to do surgery anyway, but the genetics person is pushing it so I'm really struggling with that decision right now.
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Thanks, kmmd.
I just know that eventually I would have to face menopause. Getting rid of my ovaries seems safer to me than taking any drug for 5 years. AND then what? Thanks for stopping by? You stop taking the drug & your hormones do their thing again?
I have not even found an oncologist yet, I am mid-move, but, I certainly want to be armed with as much information as possible when I am faced with a cookie cutter treatment plan.
I ain't a cookie.
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Dawnbelle, that cracked me up. I aint a cookie needs to go on a T-shirt.
From talking to others here and what I know you stop taking the drugs and whether the hormones do their thing again depends on your age and whether you went through chemopause for those that did chemo. I agree with you, having to go through menopause eventually is something I've used in my decision too. I just think our body does it better for us then the drugs do. Plus, if my onc is right, even after menopause and we're no longer producing the estrogen or fertile the ovaries still serve some purpose we may miss if they're gone. But, if it helps who the heck wants to go through all this again..
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You know, survivors aren't the only people who are prescribed tamoxifen. Women at high-risk of breast cancer are often put on tamoxifen to prevent occurrence.
I'm another Grade 1, Stage 1 lady - It ain't comin' back any time soon, thank you God. But I never again want to face that horrible sick feeling of KNOWING it's cancer, and that I may die. Is trying a pill such a high price to pay for not feeling that again?
My side effects are really minimal - my thermostat regulates badly, but I don't have hot flashes or night sweats. Ask your Mom what her menopause was like - she's the best predictor of how you'll do.
Playing around with not taking hormonals was, for me, a way of regaining control over my life. I didn't have a choice about surgery - I had to have at least part of my boob carved away. I didn't have to have chemo (and, let's remember, that this is because it just isn't that helpful for ER+ women), and I got very sick from rads. Tamoxifen, I have to take every day, on purpose.
I have asthma - I take 4 pills every day so I can breathe. They have side effects, but I am SO addicted to oxygen. I just take tamox with them.
I'm with member. There is over 20 yrs of research that shows that taking these pills help save the life of a significant percentage of women who have had breast cancer. Are you one of those who need it? I don't know.
I decide every day that I can do this.
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Hi ladies -
Many,many thanks to all of you who were kind, caring and thoughful enough to offer your input, advice, and concern . . . I am both cursed and blessed with being an "independent thinker" and I am also a research fanatic. I have never taken what any doctor has told me at face value. I have always armed myself with research and with alternative treatment plans to discuss. And I ask a thousand questions! (which drives them absolutely bonkers, as you may well imagine . . .)
However, I am fully cognizant of what I refer to as my "rogue node" with that pesky micromet . . . here's what I have decided. It will be contingent upon the results of my Tamoxifen metabolism test. If it results in indicating that I can metabolize it appropriately, I will try it. I will not know how it will effect me until I do so. At least I can give myself that chance.
However, if I am in that minority where it will be established that I will not be able to metabolize it appropriately, then I will discuss all other alternatives with my med onco. Should I be a suitable candidate for Tamoxifen, I will tell my med onco that I want to be monitored closely while taking this drug - which will mean an endometrial biopsy every year, and any other testing that will be deemed appropriate. I refuse to be given a prescription for Tamox and then left to my own devices. That I will not tolerate.
What I did not mention previously is that my med onco said I would be on Tamox for two years, then when I go into menopause (I am 52 and still getting my period!) she will put me on an AI. So we shall see. My mother reached menopause at my age with little or no side effects - she told me she had one hot flash, and that was it! Never needed any HRTs and felt absolutely fine. She hardly noticed it. So that I suppose augers well.
BUT - if the side effects prove to be intolerable, then I will be adamant in my decision to explore other options.
Thank you all again in assisting me in making my decision - which was very difficult - all I can say is that if my quality of life is going to be severely compromised, I will not continue with it. I know three women who have been on Tamox: one went off of it after a year because it made her very sick; the other developed endometrial cancer (she's ok, thank goodness); and the third had a rough time during the first two months and then it all leveled off and she is still taking it and feels great. So you can imagine the rollercoaster I have been on in making this decision!
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I was really hoping for some input on my situation. I have been asking this question for 5 months in different threads and get no response. Is it just because no one knows? I am aware that being ER+ is a good thing as it gives you a directed therapy. I am just concerned that the studies seem not to include low and I mean low ER+%. I also would like to mention that I am now full on menopause, having hot flashes every 40 mins day and night. I already went through this about 4 years ago and now once more with feeling. I have had hormone test and my estrogen is no longer producing. It can however change and needs to be monitored. I am a PA so if this is that confusing to me I can imagine how hard it would be to a non medical person.
Britt: I am so glad that you have come to a decision.I think that you are doing it intelligently. I hope that you die of old age. No one gets out of here alive.
I would appriciate any imput.
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Hi, Bold -
I agree with you about the limited input stuff on Adjuvant Online - it is far too generalized and there is not enough information that is allowed to be entered. It totally frustrated me, also!
However, I note that you are HER + - has your onco discussed Herceptin? I am not a medical professional by any means, but I understand that is the systemic drug of choice for HER + and that should really be all that is necessary if your estrogen is no longer producing. however, as you also noted, that could change. Have you ever considered getting a second opinion? I think that would be a good idea.
I hope this helped a bit - and I loved your good wishes - "no one here gets out alive!" That made me laugh. But I know how frustrated you must be!
Best of luck and keep us all posted<
Maria
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Britt, I would think that the screening tool you would most need is a transvaginal ultrasound, not a biopsy. I've had both but I only had the biopsy because of abnormal bleeding. The ultrasound will be able to alert your docs to any thickening of the uterus. I also want to inject a bit of caution in your reliance on the metabolizing test. There is very little consensus about this test and many oncs say that it shouldn't control treatment decisions because they really don't know enough about other pathways for metabolizing the drug. Some oncs who used to conduct the test have moved away from it. Of course, there's no downside to collecting the information but if the test results lead you to forego any systemic treatment, I don't know if that is helpful.
Finally, I want to say something about this whole cookie cutter thing. Of course we all want to be treated as the unique individuals that we are and we bring our own circumstances to our treatment decisions, but treatment for breast cancer has become increasingly individualized. There are so many variations in treatment depending on the particular pathology of your tumor. I know a lot of women who have had breast cancer in my area and not a single one has had the same treatment as I did. Just because your onc recommends something to you based on your own disease, doesn't mean he or she isn't thinking.
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Thanks, I am on herceptin and will continue to be on it till November. I have done chemo and am 1/2 through radiation. I am hitting it hard and am getting more serious about exercise and diet and alcohol consumption. I really stopped drinking wine when I started chemo. Just on occasion. I use to love to have a glass when I cooked diner or visited with friends. Now not so much. I am deconditioned from fatigue. I am crawling out of that hole a little slower. I have a lot of fatigue from radiation and lack of sleep from estrogen deprivation. What a world. I have much to be grateful for as well. Again thanks to you and I hope to have more response. As far as a second opinion is concerned its hard to find a Dr that does not use the same model.
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PS. Thats me in the avatar. I was auditioning for the Conan movie at the time. Now it is to kick cancers ass!!!
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I too want to say something about MY "cookie cutter" comment.
I have yet to even see an oncologist. From what I have been told they enter your tumor size, ER info into a computer program & say "This is what you should do."
I meant NO disrespect to anyone.
I just believe that we each have a voice & should question & understand each choice we make.
My breast surgeon told me he was so sure my lump didn't need removed he shouldn't even bother sending it to pathology.
Should I have listened to him? Because it seems my tumor wasn't cookie cutter then, it certainly won't be now....
My point was we are all different & I am learning it is all a very individual process.
Much respect & admiration, Dawn
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AnneN, I apologise if I sounded flip about chemo, that was not my intent at all. My point was, that I think that it isn't just "15 seconds each day of swallowing a pill", for some it has terrible side effects that effect their quality of life for years, and I don't believe in trading one disease for another. My onc actually said to me, we will check you for uterine cancer which is quite common on Tamox, but don't worry we will catch it early! are you kidding me!!! Everyone is different, and can't be judged for their decisions, I am boggled all the time by the things I read in these boards, but I respect that people have to make up their own minds about their treatment. People take tamox or one of the AL's and have a recurrence, or don't take it and get a recurrence, or a bunch of other variables, bottom line is, nobody knows what's going to happen, its a crap shoot whichever way you look at it. God Bless you, I pray for all of us everyday whatever we choose, we are all sisters in this battle.
L
ox
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Lorraine -
You are so right - it's all a crap shoot . . . each of us has to do what we believe is right for ourselves. That's all I can say. Only God or the universe knows what is going to happen.
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Dawn, I join you in not wanting to be cookie cutter. And I want the t shirt, with 2 cookies, statigically placed. I am going to ask my bud Laura GTO to work on a design! I drove my doctors nuts, but what really offended me was that the onc had my treatment all figured out, with stats, before she even MET me. That is treating the disease, not the patient, and from that day on I began to question everything. The more I read, the more I was chastised by my doctors, because they did not have time for my questions. It was so frustrating. If there is anything I would do differently, it would be to educate myself sooner. I would have made better treatment choices. You need to learn as much as you can about these treatments, so no matter what you decide, you are totally aware of all the pluses and minues. Too many people do not understand hormones, and their importance to our health. There is only one bad estrogen, that is linked to cancer. The others are either useful during our childbearing years or help our bodies function. Tamox works because it helps to prevent the bad estrogen, estriol, from binding to cancerous cells. DIM/I3C/Miocin, do the exact same thing and Fairy will attest that our estrogen tests prove this. Arimidex totally blocks estrogen, which is why women have such bad join pain, brain fog, etc. These are symptoms of lack of estrogen. I could never come to terms with taking Arimidex, as my onc wanted because I felt it was throwing out the baby with the bathwater. It blocked all my estrogens. By losing 40 pounds, with a nutritious diet and daily exercise, my estrogen levels were lowered naturally. My cortisol and insulin levels also came down into a safe zone. No matter what you do, you need to insist on having a doctor take these tests, by blood, urine, or saliva, to see if what you are doing is working. And now I am researching and considering the addition of a little biodentical progesterone, which is protective against cancer.
I also think you all need to understand the importance of the thyroid in all of this. More and more research is showing that low thyroid function is a major cause of bc because it indicates lack of iodine. Iodine is essential to cell metabolism throughout the body and it concentrates in the breast to protect breast tissue. In fact, it may be more protective than any other single element. I would encourage everyone to read the information on the iodine thread and then read Dr. Brownsteins work. There is a link to an interview with him on that thread that I found, that gives a lot of great infromation and I hope you will all listen to it.
I would never tell anyone that they should follow my path, but I think that we all need to learn from those who have been down different roads. These are not easy decisions to make and no one should make them for us, not even our doctors. No matter which route we take, we must feel that it is the safest for us, or it will not lead us back to wear we started from. And the one thing we ALL have in common, is that we do not want to go back to the beginning of all of this.
Bold, I love your Bold avatar! I saw a Conan woman in one of those shows at Universal Studios. She sure kicked butt! Keep kicking it! And giving up the vino is really important. It is highly estrogen, as is sugar. A little wine once in a great while is okay, but we should not be consuming alcohol regularly if we had bc.
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Fairy49 - No, no need to apologize - you didn't sound flip about chemo, and I am sorry if I sounded flip about women who've had bad SEs with Tamoxifen. What I meant was that for ME, Tamoxifen has been just 15 seconds a day of swallowing a pill, plus a few hot flashes here and there. I'd just like the women who are trying to make up their minds to hear that for some of us, it's been no trouble at all - and literally a lifesaver.
Bold - you asked how positive ER+ are we talking. In my case, we're talking over 90% estrogen positive. And Dawnbelle, highly estrogen positive is a good thing - means it's more likely that depriving the beastie of estrogen will shrink it (as it has for me).
Vivre, I wish I had known about the link between low thyroid and breast cancer. I fought long and hard for years to stay off thyroid meds, because I had no symptoms and didn't want to mess with it. Finally I had my doc show me my numbers over the years, and the trend line was so clear that I gave in. Maybe I should have given in a lot sooner.
Ah, well. My docs are doing the best they can, and so am I, and so far we're beating it.
Everybody who is interested in adding diet/exercise/lifestyle to your toolkit, I highly recommend David Servan-Schrieber's book Anticancer: A New Way of Life. He's a physician and cancer survivor himself who combed the medical literature after his cancer recurred, and this book is the result of what he learned. Among other things, he found a study saying that a half-hour walk six times a week makes a significant difference for those fighting breast cancer. He has very specific recommendations about lifestyle changes that are helpful in addition to (not instead of) traditional medical treatment.
Thanks to all of you for posting. I learn so much on these boards.
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AnneN - thank you for that I was feeling awful that I had offended you... I am so very terrified of pills of any kind, I just can't explain it, for instance I had a UTI this past week, the doc gave me antibiotics, I literally went into a major panic attack when I took the first one (keep in mind I had the antibiotics for 3 days without starting), I am terrible with pills! Its quite ridiculous! even if something doesn't have side effects, you can guarantee I will get side effects!! aaaahhhh!!
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Fairy49 - oh, I'm so sorry that you felt awful, because I wasn't offended at all. But I was really surprised - because my big fear is chemo!
When my onc explained that we could treat this thing with tamoxifen, and later surgery if the hormone therapy worked well, I asked her, "so when do we do chemo?" and she replied, "if this works, maybe never." Never is good for me!
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I also have DCIS and just had a mastectomy on June 3rd. My oncologist told me that a recent large-scale in Europe found that there were no benefits of Tamoxifen - with the side effects, I won't be taking any hormonal therapies.
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My oncologist told me that a large-scale study in Europe proved no benefits of taking Tamoxifen. I won't be taking any hormonal therapies.
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Mnmt, was the study your onc referred to about early-stage survivors like yourself? That would make sense that at Stage 0 there might not be any discernible benefit - because most of you are going to live a very long time anyway whether you take the Tamoxifen or not!
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mnmt, I don't believe with DCIS if you had a bi-lateral mas, that tamox is recommended. Would your doc be able to give you a link to the study by any chance?
AnneN! I am SO thrilled for you that tamox has worked and you could avoid chemo, and thrilled that you can take tamox with no side effects yay!! Isn't it funny, not funny ha ha, but funny strange, how everyone has different fears on what they will and won't do? For instance, it took me about 30 seconds to opt for a bi-lateral mastectomy, even when the breast surgeon said lumpectomy was an option. I guess that is what makes things interesting!! different strokes and all that!
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mnmt, I think fairy is right
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