Does anyone refuse hormone therapy altogether?
I have just been to my onc and been given the choice between Tamoxifen and Arimidex. My cancer was a 1.2 cm mucinous bc in a duct, with low growth rate. This kind always seems to be positive for hormone receptors and negative for HER2. I had a double mastectomy (with reconstruction), no rad, no chemo, and I was told there was a 1% to 2% chance of reoccurance of this type of cancer.
Information I read on the Mayo Clinic web site seems to question whether hormone therapy is necessary in this sort of case. My onc feels I should be taking something.
The side effects sound pretty bad for both of them, and research articles I've been reading indicate that one third of women on Tamoxifen stop taking it in only 1 to 2 years. Arimidex doesn't sound to great either.
I'm questioning whether I need to take anything. Perhaps a weight loss and exercise program, which research indicates can lower estrogen quite well, would be just as effective. Especially given such low rates of reoccurance and low rates of providing any benefits.
Does anyone else have any thoughts on this?
Christine
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Christine, go to the thread called "Does anyone say no to tamoxifen" There are many postings there on this. I am on tamoxifen, but thinking of going off it to go the alternative route. Many people in this thread are doing just that.
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Christine, with just a Grade 1 and a 2% chance of recurrence, I personally would bypass tamox or an AI. IMO, the short- and long-term se's of these estrogen inhibitors aren't conducive to overall good health and well-being.
Why don't you get the opinion of one or two other oncologists, and have a good discussion with them about the se's. And do check out the thread Rose has mentioned.
Good luck and good wishes, Linda
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Christine, I refused everything ( tamoxifen, arimidex and radiation) over 5 years ago. Latest mammogram in March of this year was clear. I didn't have mucinous BC, but I too had a slow growing grade 1... IDC mixed with DCIS. I haven't done any lifestyle changes either. I'm still overweight, still smoke, still eat the same diet. Also don't use any kind of alternative therapy or treatments. I've just kept right on doing everything as I've always done it and living my life as I've always lived it. I was just 8 months into a natural menopause when I got diagnosed and now havent had a period in exactly 6 years. That's more than enough estrogen deprivation as far as I'm concerned and I just won't go any further with it than that unless I'm absolutely forced to take a different approach someday.
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MarieKelly! Thank God for your honesty! You made my flippin day!
I am thrilled that you are doing so well!Lorraine ox
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Christine ~ You may want to read through the Natural Girls thread. Quite a few of us on that thread have declined Tamox or an A/I, but are seriously doing other things to get our estrogen levels down.
Personally, I had a brief experience with Femara, which did not agree with me at all. After a lot of reading and soul-searching, and with the help of a very supportive PCP, I'm doing a number of things (diet, estrogen-modulating supplements, serious exercise) to lower my estrogen levels without total estrogen deprivation. I recently had my estrogen levels checked, and both my estrogen and Estradiol were extremely low (I'm post menopause), so I think that what I'm doing is working.
Hope this helps, and do check that other thread, as well as the one called "Motivation," which has to do with exercise, but also has women on it who are not doing hormonal treatment. Deanna
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Thanks, Deanna. I'm going to check out those threads! I'm heartened to hear that reducing your estrogen naturally has worked so well.
Christine
BTW, how to I find the Natural Girls thread? I've found Motivation.
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MARIEKELLY IS MY NEW HERO!!!!! YOU GO GIRL! I am suppposed to start tamox tomorrow.....I am going to try it, but if I have horrible side effects I am done. Has anyone tried herbs? Tami
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I am very concerned that the hormonals section is turning into an anti-hormonals section. This is a personal decision and I know that for some women the cost benefit analysis doesn't make it worthwhile to take these drugs. But that doesn't mean we should be cheering women who decide to not try the drugs when their oncs recommend them. These are proven lifesavers and while many women, especially those with very early stage I cancers will probably be just fine without them, many other women will not. I just came back from my 25th college reunion and I was thinking that if not for tamoxifen I might not have been there. I was THRILLED when I learned I was er/pr+ and was therefore a candidate for tamoxifen and AIs. Spend some time with the triple negative ladies and you might have a new appreciation.
Finally, I have to say that most women don't have horrific side effects. you hear here from the ones who do, but many of us are doing just fine.
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Member, even though this is the hormone thread, this particular thread asks "Does Anyone Refuse Hormone Therapy Altogether?", there are plenty of other threads where everyone on them is taking tamox or one of the AL's.
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To those who have implied I shouldn't be posting this question:
I am simply trying to get some more information on this topic so I can make an important decision. This section is about hormone therapy, so I thought this was the appropriate place to ask the question. I got some very helpful replies from several women and I appreciate them very much.
However, I find it quite hurtful to have someone say "go to another thread and don't ask the question", as well as someone else to dump on me for considering not taking the medication because others are suffering more. I am quite happy to find Member of the Club is doing fine on Tamoxifen, but I do not need the hurtful and pointed comments comparing me to women who are unfortunately worse off and implying I should be grateful to take the medication.
All our cases are different, and no one should be telling someone else what to do. I reserve the right to ask questions and make my own decisions.
I am also disapointed that this discussion board is not more supportive. I guess you have to be a "triple negative lady" to get the support here.
Christine
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Christine, I think you may have misunderstood the reccomendation to go to the other threads. That was suggested because they are rich with the information that you are seeking. We have all ask many questions and we want you to as well. This is how the collective brain empowers us. Please don't be discouraged. We are a very loving group of ladies with a common goal...good health
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I don't understand why people won't take everything they can to stop this thing. It is a merciless killer. There are no second chances. Tamoxifen and Arimidex are massive weapons against recurrance. Why not give them a go at least? I am aware that cost is an issue in the US which is something we don't have to worry about here as all cancer meds are free. But even so - isn't it a cost worth paying?
I have been taking Arimidex for 6 months. And it has taken that long for the side effects to settle down. But now I feel fantastic - better than I have felt in ages. And I feel confident that the AI is doing the business.
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Christine ~ The "natural girls" thread is in the section entitled Alternative, Complementary and Holistic Treatment." It's a very lively thread, and you shouldn't have any trouble finding it if you click on "Forums" above and scroll down to the Alternative section.
I think we all have to realize that we may be coming from very different experiences re. our treatment. What I strongly favor, someone else may have had a bad experience with, and vice-versa. And, I absolutely do not believe that anyone should blindly follow what someone else may be doing, nor should any of us do anything without the guidance and blessing of medical doctors. But we are not all alike. Tamox & A/I's are given to us to block or modulate estrogen. The bottom line is, they are not the only way to do that, and they have SE's that may go away or may prove to be intolerable -- and I'm not talking about a few ache & pains. My PCP and onc were happy to have me try another route -- not ignoring the need to lower my estrogen, but accomplishing it another way that takes effort and that they both are monitoring. Taking an A/I would be much simpler, but it wasn't right for me and may not be for a percentage of other women. Deanna
P.S. Just wanted to add that my Rx's are 100% covered. My vitamins and supplements are not, and I take a lot of them in lieu of an A/I. In my case, an A/I would have been far cheaper.
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I never told anyone to go to another thread. Maybe someone else did. And I'm not comparing anyone here to triple negative women, I'm not sure how that message came across. I think given Christine's particular form of cancer, it make sense that she is looking at these issues. I think it is very important for me to tell newbies I am doing fine. With all the negative posts about tamoxifen, I think my experience is a balance, and frankly more typical, just not more typical of the posts.
I raised the issue of triple negatives because I can remember clearly waiting for my pathology information and praying I wasn't triple neg so I could take advantage of a hormonal treatment after finishing chemo. We are fortunate to have this option.
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Christine, when I read Member's initial post to your question I didn't feel she was implying you go elsewhere to ask, but just suggesting that there may be other threads to get information that might be a little more helpful. Her comment that this may be turning into an anti-hormonal thread was just that, a comment, and I didn't really believe she meant that to be actually true; we have all teken the liberty of speaking our minds just because we know we can do that here. Case-in-point is your last paragraph about these boards not being supportive - do you really mean that? I'd be quite surprised if you really felt that, as there is no better place to find support then in these wonderful sisters.
I have found that we should post all over these boards because there is much to be found in different sections. You can't get all the information that will be valuable in just one place. That's why you were sent over the the 'natural girls' thread, the 'motivation' thread and there are probably other threads that will give you other information. That's not to say you shouldn't post whereever you please, because you are free to do so and you should and you will get answers regardless.
Blessings all. (hopefully I have not overstepped my boundaries!)
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I think it was Deanna who suggested the natural girls thread, and since she posts there herself I'm certain she meant it to be helpful.
Is there any reason not to try tamoxifen and see how it goes?
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Member- I really do not mean to offend you, but I think we are coming from two different viewpoints. As a stage 1 survivor, like Snowraven, I may feel that I can identify with her feelings more than yours because we had more similar situations. I cannot begin to tell you the fear that I felt about being told I should take arimidex. It still makes my hands shake when I think about it. It may not seem logical to others, but the fear I had of this drug scared me more than when I was told I had bc. I know it sounds absolutely crazy, but there was this deep rage inside me at the thought that I would have to take a drug. I hate drugs, and the thought of having to take one that had dubious side effects, and had not long term studies on, scared me to the core. I did not want to be reminded everyday that it was not over, when I took some pill. It made me feel so powerless and that cancer would always be with me. I took the pills for only a few days, and I would flip out every time. I literally screamed on morning, and would sob through rads, because I was so damn mad I had to do this crap. I could not see how taking a drug that scared me so much and that I did not believe in would be a benefit. I had many long discussions with my doctors, who of course tried to talk me into it. Then one day I picked up a book by Dr. Christiane Northrup called "The Wisdom of Menopause". The book just kind of opened to a chapter on breast cancer. I took it as a sign. Dr. Northrup stated that we need to trust our instincts and do what we feel is right for us. I felt like a 2 ton weight had been lifted off of my shoulders. Here was a doctor telling me that for whatever reason, my inner voice was rebelling and it was okay for me to listen to it. That is when I started to look for alternatives. My search brought me to a forum here, where I found many women who thought like me, but who were being attacked for choosing not to take any drugs. I think that is why we get so defensive. It seems we always have to defend ourselves. Yet those who choose to always follow doctors orders, do not get the same grief from us.
The more I searched, the more I learned about how many things I could change. It was very empowering for me. I learned about what I needed to eat. I learned about what supplements to take that are antioxidant like grape seed and tumeric and vitamin C. I found out I had a vit D deficiency and supplemented for that. I lost 40 pounds and cut out all the sugar, which was contributing to my out of control hormones. I have had my hormones tested and they are balanced now. It is not just estrogen that feeds cancer, it is the inbalance of the good and bad estrogens, and the lack of progesterone that is the problem. And I took the iodine loading test and am supplementing with iodoral, which is essential to breast health, and is showing to be more promising in preventing cancer than hormone therapy.
To be honest, it does not matter to me one bit if people want to choose a different path than mine. But I know how I struggled with this decision, and if someone asks if there is another way, I figure they are going through the same doubts I had. I only want to help others by encouraging them to look at all the other options to drug therapy, if they choose. Just because some of us do not choose drugs, does not mean we demean those of you who do. It simply means that we have made a different choice. There is not right or wrong here. It is a personal decision we all must make. It is just so frustrating that we are always playing defense here, when we feel we are playing offense when it comes to cancer. The best defense is a good offense. I am attacking cancer from every angle. I feel fantastic and I do not have any worry that it will come back, even though I do not take any presciptions and never will.
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Actually, my onc has concerns about my taking Tamoxifen because I have a family history of blot clots and strokes. I consulted with my pharmacists, both at the hospital and at the pharmacy I use, and that is where I got the information about a conflict between Tomoxifent and Paxil, which I need to take. It was finally decided I am not a candidate for Tamoxifen.
That leaves the other choice of Arimidex, which I can take because I am post-menopausal. However, it is very expensive and I can't afford it. So I am looking for alternatives, especially given my cancer was small and is of a very rare type that never metastasizes. So I feel exploring alternative choices is reasonable given my particular circumstances.
If my cancer were of a different type, and had other more serious features, I would gladly take what I could. I would also have had chemo, but my onc said it was not necessary. If this is your situation, I would be taking what you take, too.
Perhaps at some future date, I will be able to afford Arimidex, but in the meantime, I am seeing how I get on. I have been told my my onc that the probability of relapse is only about 1 - 2% in my particular case. So I don't feel I am taking too big a chance if the probability of success is 98 - 99%.
I am posting here because it is a thread about Hormone Therapy and I thought I would get some helpful advice about hormone therapy.
Christine
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I'm not going to reply exactly to, nor post a rebuttal to, a few posts above, but I will state for the umpteenth time that I refuse to take Tamox despite being BRCA2+ with family history (did chemo 6 of 8, and rads) I DID try Tamox on-an-off for about 9 months and it incapacitated me in numerous ways. So, yes, I did try it and found it to be too toxic for me. Do I suggest that everyone try it? No. We have to make our own decisions and then be happy with those decisions.
If one is looking for a "try it anyway" or a "no, don't ever do that to yourself" opinion you will certainly find it on these boards. Read, be informed, make a decision and then don't let anyone bully you into something else, no matter what you decide to do. It's your body and your life after all is said and done.
(if this makes no sense I blame it in jetlag - my apologies)
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Christine I think in your situation it makes complete sense to consider foregoing these drugs. I know a woman who has a similarly optimistic prognosis and also a landmine of issues with hormonals -- she is prone to blood clots and premature osteoporosis, so can't take any, and she is absolutely right to forego these drugs.
Vivre, wow, I'm so glad you didn't have to have chemo given your reaction to prescription meds. My only concern is your absolute insistence that diet and exercise guarantees you won't get mets. You've chosen this route and I hope and expect you will be fine. But I think it is dangerous to promote this idea that diet and exercise are enough. For many women it just isn't so.
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After reading this thread, I wonder (if you can- ie you can tolerate the drugs and have no medical/ family history that would advise against taking them) why not do both? Wouldn't a change in lifestyle and the medication be the best of both worlds solution for many women? Of course everyone is different.
I'm on here to help my mom who feels too overwhelmed to come read too much but has been very happy to have the information that this discussion board provides. ( and a daughter to sort through the info and ask questions for her) We are both grateful for all of you.
She is on Arimidex with out too many negative SE and I have been encouraging her to eat better and exercise more. (Off topic but-Accupuncture really helped her during chemo)
Thanks everyone. You're a great help to us.
Soprano
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Member, I guess you missed the part when I said that I am doing more than just diet and exercise. I continue to monitor my blood levels, I have a doctor who understands that BALANCING hormones is important, not blocking them. I am taking iodine supplements as it has been proven that lack of idodine is an indicator of breast cancer, and on and on. As I said, I am attacking on all fronts. The only thing I am not doing is a drug protocol because I do not see any proof anywhere that these drugs would help me. In fact, in may case, they would do more harm than hurt. And yes, I am lucky I did not need chemo. In fact, when the nurse implied that they might consider it, even though my nodes were clear and my margins were wide, I told her to go stuff herself. They only wanted me to do their Arimidex study so they could collect their stipend. I refuse to be a guinea pig for a drug company. This drug has only been out a few years. Who knows what the long term effects may be. And when I did the research on this drug, the ONLY study that was done before it was put on the market was a study comparing Arimidex to Tamoxifen. In fact, the drug was rushed to market before the study was even completed. Coincindentally, just as the patent on tamox expired???? There was no armidex to no armidex study, and there was no arimidex vs diet and exercise study. So I do not see that there is any proof that taking arimidex is a safer than what I am doing. And I know that you may not believe this, but I do not even think about mets. Yes I know it happens, but I know it will not happen to me. Call me arrogant or naive, or whatever, but I will not let fear control my life. There is a lot of power in positive thinking, and there is a lot of poison in fear. So whatever we choose, we have to really believe in it. I really believe that I am doing what is right for me, just as much as I believed that taking a drug was not going to help me.
Here I am defending myself again. Why do I have to do this? Why do you insist on trying to imply that I am making a stupid decision. I would never say to you, go ahead and take a drug and suffer the consequences. Why do you care so much that I do not want to take the damn pills? It makes me think that you are doubting your own decision and are trying to justify it by coercing others. The path I have chosen is not easy, it takes a lot of committment. I would never try to push it on others. But it is my life, and I am living it and feeling great!
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Hi Christine, my thoughts are that a second opinion might set your mind at ease in terms of which course to follow. I am not a doctor but the information you put in your post does strongly suggest that with your kind of cancer, follow-up meds might not really be indicated. Hormone therapy is intended to lower the risk of recurrance, and if your cancer is indeed already at such low risk for recurrance, hormone therapy probably is not going to give you much benefit.
But again I stress, I would be more comfortable getting a second medical opinion and also having a frank and honest conversation with your existing onc about your options.
Good luck, I would be interested in hearing any follow up information you decide to post!
~Lynne
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YOU MADE MY DAY 'vIVRE, Until I read this post, I thought that I was nuts. My doctors are fighting mad at me because I will not take their drugs. I beleive that my hormone patches that I took for almost 10 years caused my cancer. My doctor would push me to take them, I really did not need them for hot flashes, but he said that I would live a long time if I took them, and that it would protect me agaist heart and bone problems, WRONG" So why would I trust my doctor now, and give me a drug that has not been proven over the long term on side effects. I felt the same exact way that you do, lose my weight, eat right, exercise, and see if that helps. My chance for reacurrance is 1% a year. They need to do studies for people like us that want to go natural. I have nothing against those who choose the hormone therapy, you are very brave in my eyes and if I was not so chicken, maybe I would try them, but I had a bad experience, with any kind of drugs. Whatever choice should be our own, but it is nice to know that I have support either way I go. Thanks girls. P.S. Vivre, how do I find out what supplements that I need?
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Ok - I am waiting for the results of the Tamox metabolism test, which should arrive in a couple of weeks. Until I find out the results, I am not taking the Tamox. My question is: the tumor was 2.2cm, I am ER PR positive, HER2 negative - had a .2cm micromet invasion of the sentinal node - all other nodes clear - clean margins with surgery - just finished radiation three weeks ago - and also did not need chemo because of low Oncotype score of 12. Now, when I mentioned my reluctance to go on Tamox with my med onco, and presented her with research I did on Brevail, she told me that I "had no choice" and HAD to go on Tamox, since I am pre-menopausal, did not have chemo, had a micrometic invasion of one node, and had a tumor that was 2.2cm. She did read the Brevail literature with interest, however.
Does what she said make any sense to any of you?
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Hi, I just kind of stumbled across this thread this afternoon. I had surgery on 4/21, had an appointment with the oncologist both before and after that. Then I went on vacation the end of May so I had a follow-up appointment with the oncologist the first week of June. During that lag time, I did a lot of research; here, on the internet, talking with other ladies in person. I decided I did NOT want to go on the Arimidex, that the risk of putting this unknown substance into my body for 5 YEARS was worse than the risk of recurrence. When I told the oncologist he tried to convince me to go on his program. I finally said, I did not come here to argue with you, I came to tell you I'm not going to do it. Well now he wants me to come in once every 3 months, do blood tests. I guess I will go back for that.
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Cheyanne ~ You might want to check out a thread here called "natural girls." It's in the Alternatives section. Many of us on it have refused Tamox or an A/I, but seriously work at lowering our estogen levels with diet, exercise, and natural supplements like I3C or DIM. It's totally do-able, but oncs just are not into teaching it or monitoring us. Deanna
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Britt, you need to take the drugs. I'm actually surprised that they didn't push you to do chemo, but with the size of your tumor and the cancer in your lymph node, there is no small chance that cancer cells are circulating in your bloodstream and you need some kind of systemic treatment to kill them. You want to do everything now to destroy the beast because if it comes back it will be much, much harder. My stats, as you can see, are similar to yours. I not only did chemo but I did an aggressive protocol and I have been on tamoxifen for over 4 years.
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Britt, I have to agree with Member, I am all for complimentary therapies but if I had node involvement of any kind no matter how small, I KNOW I would be making different decisions. Please think carefully about this.
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No Britt, you do not have to take the drugs. Please do not let your oncologist or someone posting here tell you what you HAVE to do. They can share their opinion which is what you are asking for--but you need to decide for yourself. My situation is very similar to yours--micromet, oncotype 14, but with a larger tumor of 5 centimeters. I was on Femara for 4 months and totally miserable. I did A LOT of research and am very comfortable with my decision to quit. Like Vivre and others I was more concerned about what the drugs were doing to me and my quality of life. When I was on the stuff it was harder to do the healthy diet and exercise that I think make a huge difference in all areas of my health. In addition I take natural progesterone and calcium d-glucarate (along with D, fish oil, flax seed). Three women in my support group of 7 are having hystertomies directly caused by taking Tamoxifen. You might decide to try it and that would be fine. But you would not be wrong or stupid if you make another decision. Just be informed and make your own decision. Too many women never question their doctor's cookie cutter protocols and are far less healthy as a result. Best of luck in your decision making.
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