Does anyone refuse hormone therapy altogether?
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I know two people who could not take tamoxifen because of a preexisting blood clotting issue. One was post-menopause but this was years before the A.I.s came along. The other was pre-menopause so the A.I. was not an option. So they both took no anti-estrogen drugs at all, which wasn't the doctors first choice, but what can you do. Both women had mastectomy only, no chemo, no rads. Both are fine and healthy to this day.
Of course all the anecdotes in the world don't change your odds, and no one can predict the future. But just saying, if your MO is putting a big guilt trip on you for not wanting to take these drugs, telling you that you'll die if you don't, well, that is just simply not true.
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So much depends on Grade, Stage, Oncotype, if available, etc. Deciding to treat or not, if never a one size fits all. I had two positive nodes and my MO said no chemo. I'm fine almost five years out. But if the recommendation had been chemo, I would have done it. I have advanced degrees in psychology and counseling, but know very little about medicine. I trust the professionals I respect to guide me.
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Linda111, I too was taking Letrozole...started it in April of this year, and called my onc in August and told her that I can't do that drug anymore, as it was killing me. My joints hurt SO badly....they said to go off it, and since I was going on vacation, they said they'd call me in about 2 weeks to see howi I was doing. When they called back, I told them my joints still hurt and they said that the medication must not be what was causing it. I told them that prior to takine the Letrozole, I had never had ANY issues with my joints....so "I" believe the mediation is causing it. It's now September 12th, and the pain in my hands is worse. My thumb joints lock up and I walk like a 90 year old...I'm only 56!!! I go to see my onc next week. I'll be interested to see what she says then.!
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I've been off Anastrozole for several weeks. Still suffering some of the side effects. Trust yourself. You know what you're feeling. Plenty of us are having the same experience. I really don't think that aspect has been studied well enough and probably won't be untiI "they" are no longer in denial. I am no longer volunteering as a guinea pig.
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So sorry you are in pain. However I completely disagree with your doc. Your hormone levels do NOT go back to normal after 2 weeks! Also permanent joint damage from Als is not uncommon. Docs deny SE because they are the ones prescribing it. Very sad that your symptoms are not validated. Hope you come up with a solution and feel better soon.
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I, too, had debilitating side effects...so I tweaked my dose to 3/4 of a pill (letrozole). Alas, 15 months later, the beast returned in my axilla. My MO said the reduced dose was not the reason..."It should have worked, even at a reduced dose.".
Sigh.
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I had two lumpectomies for a small invasive ductal carcinoma and am in the process of radiation therapy. I, too, am scared to try either Tamoxifen or an aromatase inhibitor because of the horrific side effects. I am post-menopausal, have osteoporosis, and I smoke. I'm thinking of foregoing hormone treatment altogether and trying other methods to lower my estrogen levels. Any suggestions would be appreciated
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Nimm, I've been on an al and tamoxifen for going on 6 years. There have been some SEs but all entirely manageable, and have not affected my QOL at all. That said, I have never smoked and don't have osteoporosis. But keep in mind that even small tumors can recur. You don't have your stats listed, but grade is much more important than size. Have you had the Oncotype DX test? Results from that test assume you are on hormonals.
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I'm on Tamox after trying Letro for 5 weeks and being miserable. I'm tired all the time, but then again I have clinical depression pre-cancer and don't exercise (am obese with shitty knees). So part of my being tired all the time is my pre-cancer stuff. And the heat doesn't help, even with a/c. I'm grateful at least I can tolerate T with my profile. Not doing anything and my onc says I'd most likely be on my way to stage IV at some point. You can always stop it. When I stopped Letro after 5 weeks, my se's immediately subsided. It basically boils down to do you want to do everything you can to try not to recur or mets and deal with the se's best you can with supps, exercise...whatever may work. I think everyone is scared to pop the first pill, T or AI. But you don't know how it will affect you unless you try. If you have a profile in which the % of benefit from T or AI is low enough for you to be at peace, then don't take it. It would be so nice if they come up with something better and they probably will, but for now that's all we have for ER+.
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Arista, guess I'm weird, but I couldn't wait to pop my first Aromasin pill! I didn't have chemo, due to low Oncotype score, so I figured this med was my best hope for long term survival.
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No one here is weird. We all have our experiences. If I didn't have chemo which I'm sure is still making me confused and very fatigued every day I'd jump at a pill with my profile. Just thankful Tamox isn't making it too bad and I can handle it.
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Nimmi,
The first pill is always scary to take. I think it's because of all the bad experiences others have posted. Those of us with manageable side effects don't dwell and move on with life, because we don't need to find a way to live with debilitating SE's. You won't know how your body will react until you try it. Your body will adjust to early SE's and others SE's may develop, go away or get worse. You won't know unless you at least try!
Best wishes on this tough journey
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I had a double mastectomy early this year and had a total hysterectomy 3 years ago. I am taking Arimidex and the side effects are not pretty. I just don't understand why I need am estrogen suppressor when I already have no estrogen. I'm considering dropping it.
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Your body still makes a small amount of estrogen. If you are overweight and /or drink you are increasing that production. There may be dormant BC cells. No one knows what triggers them to become active. Taking the estrogen suppressing drugs will keep the dormant cancer cells from becoming active again while you are taking them. The risk of recurrence is real. I don't remember the statistics on metastatic recurrence vs non metastatic, but I think it was 2/3 metastatic to 1/3 not. Taking the drugs is not a 100% guarantee that the cancer won't come back, however studies have shown they cut the recurrence rate in hal. Taking the drugs or not is really a personal choice that only you can make. Good luck!
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30-40% have recurrence while on aromatase inhibitors
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My personal risk was calculated at 15% without AI, 7% with AI's.
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I just saw this on a post from 2009 and thought it would be of interest. If this is old news that everyone else has heard please let me know and I'll take it down.
ORLANDO, Fla. - Breast cancer survivors risk having their disease come back if they use certain antidepressants while also taking the cancer prevention drug tamoxifen, worrisome new research shows.
About 500,000 women in the United States take tamoxifen, which cuts in half the chances of a breast cancer recurrence. Many of them also take antidepressants for hot flashes, because hormone pills aren't considered safe after breast cancer.
Doctors have long known that some antidepressants and other medicines can lower the amount of tamoxifen's active form in the bloodstream. But whether this affects cancer risk is unknown.
The new study, reported Saturday at a cancer conference in Florida, is the largest to look at the issue. It found that using these interfering drugs - including Prozac, Paxil or Zoloft - can virtually wipe out the benefit tamoxifen provides.
Many doctors question the magnitude of harm from combining these medicines, and a second, smaller study suggests it may not be very large.
But the bottom line is the same: Not all antidepressants pose this problem, and women should talk to their doctors about which ones are best.
"There are other alternatives we can consider" that are safer, said Dr. Eric Winer, breast cancer chief at the Dana-Farber Cancer Center in Boston.
He had no role in the study, which was done by Medco Health Solutions Inc., a large insurance benefits manager. Researchers used members' medical records to identify 353 women taking tamoxifen plus other drugs that might interfere with it, and 945 women taking tamoxifen alone. Those taking a drug combo did so for about a year on average.
Next, researchers checked to see how many were treated for second cancers in the following two years. Breast cancer recurred in about 7 percent of women on tamoxifen alone, and in 14 percent of women also taking other drugs that could interfere - mainly the antidepressants Paxil and Prozac, and, to a lesser extent, Zoloft.
If women want to take an antidepressant, "you probably want to stay away from those three," said Medco's chief medical officer, Dr. Robert Epstein.
No greater breast cancer risk was seen in women taking the antidepressants Celexa, Lexapro or Luvox with tamoxifen, and there are reasons to think that other antidepressants may be safe as well, Epstein said.
A second study led by Dr. Vincent DezentjDe of Leiden University Medical Center in the Netherlands found little risk from combining tamoxifen and popular antidepressants. However, only 150 women in the study took such combos for more than two months, and they were compared to women taking combos for a shorter time - not to women using tamoxifen alone.
The Dutch and Medco studies were presented at a meeting of the American Society of Clinical Oncology.
The federal Food and Drug Administration has been considering a change to tamoxifen's label to warn about the antidepressants drugs and a gene variation some women have that can make tamoxifen less effective. An advisory panel unanimously recommended a change in 2006, but the agency is still considering it.
"This is a very controversial area," said Dr. Claudine Isaacs, a breast specialist at Georgetown University's Lombardi Comprehensive Cancer Center. "Until these data are absolutely clear, I would avoid drugs that impact on tamoxifen metabolism."
Breast cancer is the most common major cancer in American women. More than 182,000 new cases were diagnosed last year, and it caused nearly 41,000 deaths.
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So! Eight years later and the same amount of patients are dying. Very interesting. But more are being dx'd so I guess that's a good thing. My body rejects ADs with a vengence
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"30-40% have recurrence while on aromatase inhibitors"
Tamox can reduce recurrence by 50%. AIs can add an additional 4-6% benefit ON TOP. I can't take AIs as it was very debilitating for me. I may opt to try Aromasin as the MO who spoke at the talk I went to last night said of the 3, this one tends to be gentler on you as it uses a different means. If that fails then since I didn't fair well on Letrozole (Femara) that no point in trying Arimidix.
Bottom line is do what you can tolerate. Rx meds, diet and exercise (is the biggest). Everyone is different and what works for one may not for another. I met a lady last night at the talk. Was dx'd at 46. Tamox had just been fda approved. At that time she was on the 2 year plan. She got lucky and went 31 years (thinking she is cured) only to have a recurrence at age 77. Poor thing. Not sure what she's going to do. No one is cured. NED is the best we can hope for for life.
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Hi everyone...from what I'm reading on this forum. Weight loss and exercise lower recurrence rates just as much as anti hormones. Interesting to say the least!
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Let me add too that not everyone is blessed to be able to afford good produce/diet on a daily basis. It's expensive for many. We tend to forget that there are people much less fortunate than us that get cancer too. Exercise to the level it needs to be may not be something that can be done. It's not laziness or lack of time, but joint issues. I have severe bilateral osteoarthritis in both knees and a hip that's acting up, so walking at a good pace for 3 hours a week isn't going to happen for me. Hence we all need to evaluate everything in deciding to take Tamox/AI with our profile and the reality of being able to keep up with the diet/exercise thing daily for life. I for one am glad there are such meds for ER+ folks to use in addition or in lieu of diet/exercise. Ideally imo is to throw all the books at it to help prevent recurrence. Letrozole was a killer for me so I quit it after 5 weeks. For some it's quite doable. Aromasin has been tooted as the kinder AI both from the researcher, my onc and many folks here on the boards. If Letrozole/Femara was harsh then Arimidix will probably be no different. So I may try Aromasin. With my profile, I'm high risk so 4-6% possible benefit for me is relevant. I'm doing very well on Tamoxifen. 0 side effects. So getting myself to try Aromasin will be a task. We'll see.
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It is interesting that losing weight and exercise are important in fending off a recurrence but it's hard to believe it is the same as taking anti-hormonals. So then how much weight and how often for exercise and what exercise specifically?
Every woman is different but most of us do some kind of exercise at least a few days a week and I'm betting the vast majority of us were exercising before we were DX.
I'm not advocating that anyone should or should not take them. That's a personal choice. I elected to take them because I looked at them like an additional insurance policy to ward off the beast coming back but I also didn't have the debilitating side effects from them that others have.
Whether you opt for them or not just don't second guess yourself.
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That's our point: the debilitating side effects. I don't hear anyone refusing because it is against their religion. When the side effects are so bad that that you question the point of living,then refusing AI's can be a positive choice. A shorter life (maybe) but a much happier one.
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I love that this dialogue exists. I thank you all for your comments!!
I am 47 and I tried Tamoxifen twice over the last 6 months; stopped and started and stopped again. I have struggled with the decision to continue or not. I meet again with my MO in 2 weeks. The research I have reviewed indicated a 10% reduction in another diagnosis with use. Comments here have sited a larger reduction. Which articles are you referencing? In the literature I have reviewed I do not see a huge success rate, therefore I am not using one.
Input please!
Has anyone pre-menopausal not taken an anti-hormone medication comment about their situation? Recurrence or not??? I hope I am making the right decision.0 -
Suz-Q: How was your risk assessed? How was that determined?
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There are so very many variables. I am being very stubborn at this point. Full disclosure here (and why the 30/40 somethings should maybe ignore me: I am 72, both my grandmother and my mother made it to 93. I had been going on the assumption that I might too, but 72 isn't bad. My children are grown and doing well. my grandchildren are bright and beautiful. I want to spend some quality time with them. I want to do a few of my bucket-list things. There's a possibility, given my normal life expectancy, that I might win this crapshoot and die of something else - a comet, maybe. I've been type 2 diabetic for 10 years and have that very well under control. Still on Metformin, the first go-to, no neg.side effect drug for that. I lost 70 lbs. for that so I know that you who need to loose weight for BC can do it too. Also had thyroid cancer which was caught early so no worry but lifelong hormone replacement pills for that. I'm feeling good even with some arthritis and occaisional steroid injections for that. I'm not interested in any more medication regimens. I am spoiled because I have been taking only very friendly drugs. I am angry that all there is for so many of us are hormone repressing drugs which, by definition, are messing with our bodies in a very unnatural way. Sorry, I rant.
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Sara, you lost 70 lbs before your were diagnosed with BC? Did you know that Metformin is helpful for BC?
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Yes, I am aware of that but since I am taking the maximum of Metformin I haven't been thinking about that connection in particular. It makes sense because Metformin helps your body control the level of sugar in the blood and, of course, there is that phrase "sugar feeds cancer." Thank you for bringing it up because, although my numbers are in the range considered just fine for diabetics, there are things I can do. You just sparked my imagination......I have been so unable to concentrate on any one thing. There is just so much information to sort through, so many things I should be doing that I'm not, and I spend waaay too much time on this site!
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Yes, I am aware of that but since I am already taking the maximum of Metformin I haven't been thinking about that connection in particular. It makes sense because Metformin helps your body control the level of sugar in the blood and in your tissues and, of course, there is that phrase "sugar feeds cancer." Thank you for bringing it up because, although my numbers are in the range considered just fine for diabetics, there are things I can do. You just sparked my imagination......I have been so unable to concentrate on any one thing. There is just so much information to sort through, I spend too much time being frustrated and angry about the current situation with inadaquate funding for research, greedy drug companies and, unfortunately, this whole misguided pinkwashing mania.There areso many things I should be doing that I'm not, and I spend waaay too much time on this site!
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macprer,
I am 50 and pre-menopausal. I have chosen not to take Tamaxifin. I was only diagnosed six months ago, so I cannot speak to recurrence. I can say that according to my Mammaprint I have a 5% chance of recurrence in the next five years, and a 10% chance of recurrence in ten years, therefore a 2.5% to 5% possible benefit in ten years on Tamoxifin. I did not feel that this benefit was worth what taking this medication for five or ten years would cost me personally. I do take a daily baby aspirin (there are articles about this on this website dated May 2017), I do eat an organic vegetarian diet now and walk three miles a day on a treadmill. I have lost fifteen pounds, and I am focusing much more on what matters to me in life (I am much less stressed). I wish that I could tell you that I am completely at peace with my decision, but I worry about a recurrence. Unfortunately, there just is no easy answer.
Is there anybody else out there choosing a similar path? How are you doing??
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